NATIONAL BLEEDING DISORDERS FOUNDATION: Form 990, tax year 2020

View the entire original 990 at ProPublica ↗

Organization: NATIONAL BLEEDING DISORDERS FOUNDATION (EIN 13-5641857)
Tax period: 2020-01-01 to 2020-12-31
Filed: 2021-11-08
IRS object ID: 202103129349301475
Schema version: 2020v4.1
Source: Download XML · Original 990 at ProPublica

Every field in the e-filed return. Faint text is the IRS element name, for citing.

Return header
Form 990
Schedule A
Schedule B
Schedule C
Schedule D
Schedule F
Schedule G
Schedule I
Schedule J
Schedule O

Return header ReturnHeader

Field	Value	IRS element (for citing)
Return	2021-11-08T08:51:44-06:00	ReturnTs
Tax Period End	2020-12-31	TaxPeriodEndDt

Preparer Firm PreparerFirmGrp

Field	Value	IRS element (for citing)
Preparer Firm EIN	271728945	PreparerFirmEIN

Preparer Firm Name PreparerFirmName

Field	Value	IRS element (for citing)
Business Name Line1	PKF O'CONNOR DAVIES LLP	BusinessNameLine1Txt

Preparer US Address PreparerUSAddress

Field	Value	IRS element (for citing)
Address Line1	20 COMMERCE DRIVE SUITE 301	AddressLine1Txt
City	CRANFORD	CityNm
State Abbreviation	NJ	StateAbbreviationCd
ZIP	070163618	ZIPCd

Field	Value	IRS element (for citing)
Return Type	990	ReturnTypeCd
Tax Period Begin	2020-01-01	TaxPeriodBeginDt

Filer Filer

Field	Value	IRS element (for citing)
EIN	135641857	EIN

Business Name BusinessName

Field	Value	IRS element (for citing)
Business Name Line1	NATIONAL HEMOPHILIA FOUNDATION	BusinessNameLine1Txt

Field	Value	IRS element (for citing)
Business Name Control	NATI	BusinessNameControlTxt
Phone	2123283700	PhoneNum

US Address USAddress

Field	Value	IRS element (for citing)
Address Line1	7 PENN PLAZA NO 1204	AddressLine1Txt
City	NEW YORK	CityNm
State Abbreviation	NY	StateAbbreviationCd
ZIP	10001	ZIPCd

Business Officer BusinessOfficerGrp

Field	Value	IRS element (for citing)
Person	PETER HARVEY	PersonNm
Person Title	CHIEF BUSINESS OFFICER	PersonTitleTxt
Phone	2123283700	PhoneNum
Signature	2021-11-03	SignatureDt
Discuss With Paid Preparer	Yes (1)	DiscussWithPaidPreparerInd

Signing Officer SigningOfficerGrp

Person Full Name PersonFullName

Field	Value	IRS element (for citing)
Person First	PETER	PersonFirstNm
Person Last	HARVEY	PersonLastNm

Field	Value	IRS element (for citing)
SSN	999009999	SSN

Preparer Person PreparerPersonGrp

Field	Value	IRS element (for citing)
Preparer Person	GARRETT M HIGGINS	PreparerPersonNm
PTIN	P00543209	PTIN
Phone	9082726200	PhoneNum
Preparation	2021-11-03	PreparationDt

Additional Filer Information AdditionalFilerInformation

Trusted Customer TrustedCustomerGrp

Field	Value	IRS element (for citing)
Trusted Customer	0	TrustedCustomerCd
Authentication Assurance Level	AAL1	AuthenticationAssuranceLevelCd
Identity Assurance Level	IAL1	IdentityAssuranceLevelCd

Field	Value	IRS element (for citing)
Tax	2020	TaxYr
Build TS	2022-09-23 18:48:47Z	BuildTS

Form 990 IRS990

Field	Value	IRS element (for citing)
Principal Officer	PETER HARVEY	PrincipalOfficerNm

US Address USAddress

Field	Value	IRS element (for citing)
Address Line1	7 PENN PLAZA NO 1204	AddressLine1Txt
City	NEW YORK	CityNm
State Abbreviation	NY	StateAbbreviationCd
ZIP	10001	ZIPCd

Field	Value	IRS element (for citing)
Gross Receipts	$30,796,863	GrossReceiptsAmt
Group Return For Affiliates	0	GroupReturnForAffiliatesInd
Organization501c3	Yes (X)	Organization501c3Ind
Website Address	WWW.HEMOPHILIA.ORG	WebsiteAddressTxt
Type Of Organization Corp	Yes (X)	TypeOfOrganizationCorpInd
Formation	1948	FormationYr
Legal Domicile State	NY	LegalDomicileStateCd
Activity Or Mission	THE NATIONAL HEMOPHILIA FOUNDATION (NHF) IS DEDICATED TO FINDING CURES FOR INHERITABLE BLOOD DISORDERS AND TO ADDRESSING AND PREVENTING THE COMPLICATIONS OF THESE DISORDERS THROUGH RESEARCH, EDUCATION, AND ADVOCACY ENABLING PEOPLE AND FAMILIES TO THRIVE.	ActivityOrMissionDesc
Voting Members Governing Body	13	VotingMembersGoverningBodyCnt
Voting Members Independent	13	VotingMembersIndependentCnt
Total Employee	83	TotalEmployeeCnt
Total Volunteers	1029	TotalVolunteersCnt
Total Gross UBI	$1,234,783	TotalGrossUBIAmt
Net Unrelated Bus Txbl Incm	$105,704	NetUnrelatedBusTxblIncmAmt
PY Contributions Grants	$26,168,507	PYContributionsGrantsAmt
CY Contributions Grants	$19,810,154	CYContributionsGrantsAmt
PY Program Service Revenue	$1,168,043	PYProgramServiceRevenueAmt
CY Program Service Revenue	$1,244,383	CYProgramServiceRevenueAmt
PY Investment Income	$877,815	PYInvestmentIncomeAmt
CY Investment Income	$1,176,717	CYInvestmentIncomeAmt
PY Other Revenue	-$961,214	PYOtherRevenueAmt
CY Other Revenue	-$746,050	CYOtherRevenueAmt
PY Total Revenue	$27,253,151	PYTotalRevenueAmt
CY Total Revenue	$21,485,204	CYTotalRevenueAmt
PY Grants And Similar Paid	$2,067,584	PYGrantsAndSimilarPaidAmt
CY Grants And Similar Paid	$2,370,371	CYGrantsAndSimilarPaidAmt
PY Benefits Paid To Members	$0	PYBenefitsPaidToMembersAmt
CY Benefits Paid To Members	$0	CYBenefitsPaidToMembersAmt
PY Salaries Comp Emp Bnft Paid	$9,216,546	PYSalariesCompEmpBnftPaidAmt
CY Salaries Comp Emp Bnft Paid	$9,062,753	CYSalariesCompEmpBnftPaidAmt
PY Total Prof Fndrsng Expns	$0	PYTotalProfFndrsngExpnsAmt
CY Total Prof Fndrsng Expns	$0	CYTotalProfFndrsngExpnsAmt
CY Total Fundraising Expense	$749,521	CYTotalFundraisingExpenseAmt
PY Other Expenses	$11,094,103	PYOtherExpensesAmt
CY Other Expenses	$7,604,561	CYOtherExpensesAmt
PY Total Expenses	$22,378,233	PYTotalExpensesAmt
CY Total Expenses	$19,037,685	CYTotalExpensesAmt
PY Revenues Less Expenses	$4,874,918	PYRevenuesLessExpensesAmt
CY Revenues Less Expenses	$2,447,519	CYRevenuesLessExpensesAmt
Total Assets BOY	$33,540,186	TotalAssetsBOYAmt
Total Assets EOY	$38,811,644	TotalAssetsEOYAmt
Total Liabilities BOY	$4,290,536	TotalLiabilitiesBOYAmt
Total Liabilities EOY	$5,491,167	TotalLiabilitiesEOYAmt
Net Assets Or Fund Balances BOY	$29,249,650	NetAssetsOrFundBalancesBOYAmt
Net Assets Or Fund Balances EOY	$33,320,477	NetAssetsOrFundBalancesEOYAmt
Info In Schedule O Part III	Yes (X)	InfoInScheduleOPartIIIInd
Mission	THE NATIONAL HEMOPHILIA FOUNDATION (NHF) IS DEDICATED TO FINDING CURES FOR INHERITABLE BLOOD DISORDERS AND TO ADDRESSING AND PREVENTING THE COMPLICATIONS OF THESE DISORDERS THROUGH RESEARCH, EDUCATION, AND ADVOCACY ENABLING PEOPLE AND FAMILIES TO THRIVE.	MissionDesc
Significant New Program Srvc	0	SignificantNewProgramSrvcInd
Significant Change	0	SignificantChangeInd
Expense	$5,365,147	ExpenseAmt
Grant	$650,544	GrantAmt
Desc	COMMUNITY SERVICES NHF'S PUBLIC POLICY DEPARTMENT WORKS TO ADVOCATE FOR POLICIES THAT PROMOTE THE HEALTH, SAFETY, RIGHTS AND ACCESS TO CARE FOR PEOPLE WITH INHERITABLE BLOOD DISORDERS BY EDUCATING FEDERAL AND STATE LAWMAKERS, OTHER GOVERNMENT AGENCIES AND OFFICIALS, AS WELL AS INDUSTRY AND ALLIED ORGANIZATIONS. TWO KEY AREAS OF FOCUS ARE PAYER AND CONSUMER EDUCATION, AND SELF-ADVOCACY.THE PUBLIC POLICY DEPARTMENT PROVIDES TRAINING, TOOLS, AND HANDS-ON SUPPORT TO CONSUMERS TO HELP THEM BECOME EFFECTIVE SELF-ADVOCATES. THROUGH THE STATE-BASED ADVOCACY PROGRAM, NHF AWARDS GRANTS TO CHAPTERS, COMPETITIVELY, TO SUPPORT THEIR ADVOCACY EFFORTS. SUCCESSFUL GRANT RECIPIENTS ARE REQUIRED TO ATTEND SEVERAL VIRTUAL OR IN-PERSON TRAINING EVENTS ANNUALLY, HOLD REGULAR ADVOCACY COMMITTEE MEETINGS, INCLUDE NHF STAFF IN STATE ADVOCACY EVENTS, PROVIDE A MIDYEAR PROGRESS REPORT, COLLECT, SUBMIT SPECIFIED PROGRAM METRICS QUARTERLY, HOST A STAKEHOLDER PLANNING MEETING, AND SUBMIT A FINAL REPORT AT YEAR'S END.MEMBERS OF THE INHERITABLE BLOOD DISORDERS COMMUNITY THROUGHOUT THE COUNTRY ARE ENCOURAGED TO PARTICIPATE IN NHF'S ANNUAL WASHINGTON DAYS PROGRAM, WHICH IS A GRASSROOTS ADVOCACY EVENT THAT BRINGS PATIENTS AND THEIR FAMILIES TO WASHINGTON, D.C. TO MEET WITH THEIR MEMBERS OF CONGRESS AND EDUCATE THEM ABOUT THE DISORDERS IMPACTING THE COMMUNITY. CONSUMERS ARE ALSO ENCOURAGED TO ATTEND STATE ADVOCACY DAYS AT THEIR LOCAL STATE CAPITAL. NHF ALSO PROVIDES EDUCATIONAL OPPORTUNITIES FOR PAYERS TO HELP THEM BETTER UNDERSTAND THE UNIQUE HEALTHCARE NEEDS OF THOSE AFFECTED BY BLOOD DISORDERS, INCLUDING LIVE PRESENTATIONS, WEBINARS, ONLINE EDUCATIONAL MODULES, AND A JOINT COLLABORATIVE BRINGING TOGETHER PAYERS, MEDICAL PROVIDERS AND PATIENTS.	Desc

Prog Srvc Accom Acty2 ProgSrvcAccomActy2Grp

Field	Value	IRS element (for citing)
Expense	$4,400,637	ExpenseAmt
Grant	$153,762	GrantAmt
Revenue	$9,600	RevenueAmt
Desc	HEALTH EDUCATION AND TRAININGSIN 2020, HANDI, NHF'S INFORMATION RESOURCE CENTER, ANSWERED 701 REQUESTS FOR INFORMATION IN A WIDE RANGE OF SUBJECT AREAS THAT INCLUDED HEMOPHILIA, VON WILLEBRAND DISEASE, GENE THERAPY, RARE BLEEDING DISORDERS, HEALTH COVERAGE, INTERNATIONAL REQUESTS, QUESTIONS REGARDING PSYCHOSOCIAL ISSUES, AND VERY EARLY STAGE COVID-19 PANDEMIC REQUESTS. HANDI ALSO DISTRIBUTED OVER 4,155 NHF EDUCATIONAL PUBLICATIONS TO INDIVIDUALS, LOCAL CHAPTERS, AND HTCS.IN COLLABORATION WITH MEDSCAPE EDUCATION, NHF OFFERED 4 EDUCATIONAL PROGRAMS FOR HEALTHCARE PROVIDERS IN 2020, REACHING OVER 10,000 LEARNERS THROUGH ONLINE OFFERINGS ON GENE THERAPY FOR HEMOPHILIA AND EMERGENCY DEPARTMENT MANAGEMENT FOR CONTINUING EDUCATION CREDIT. THESE INCLUDE EVALUATION AND MANAGEMENT OF HEMOPHILIA IN THE EMERGENCY DEPARTMENT; MOVING BEYOND FACTOR: SHIFTING THE PARADIGM IN HEMOPHILIA THROUGH GENE THERAPY; NEWLY LAUNCHED MEDSCAPE ACTIVITY LOOKS AT GENE THERAPY AND NURSING; NEW MEDSCAPE ACTIVITY INCLUDES LATEST GENE THERAPY CLINICAL TRIAL UPDATES.NHF ALSO SUCCESSFULLY EXTENDED THE ACCREDITATION PERIOD UNTIL OCTOBER 31, 2020, FOR THREE EDUCATIONAL WEBINARS FOCUSED ON WOMEN WITH INHERITABLE BLOOD DISORDERS. JOINTLY PROVIDED BY NHF, IMPACT EDUCATION, AND POSTGRADUATE INSTITUTE FOR MEDICINE, THIS WEBINAR SERIES WAS TARGETED TO PRIMARY CARE PHYSICIANS, OBSTETRICIANS/GYNECOLOGISTS, REGISTERED NURSES/NURSE PRACTITIONERS, DENTISTS, OTHER SPECIALISTS AND ALLIED HEALTH PROFESSIONALS WORKING OUTSIDE THE HEMOPHILIA TREATMENT CENTER NETWORK OR OUTSIDE THE SPECIALTY OF HEMATOLOGY. "AN INTRODUCTION TO THE RECOGNITION, APPROPRIATE DIAGNOSIS, AND TIMELY MANAGEMENT OF VWD AND OTHER BLEEDING DISORDERS AMONG WOMEN IN NON-HEMATOLOGY HEALTH CARE SETTINGS" (SUPPORTED BY AN INDEPENDENT GRANT FROM SHIRE, AS WELL AS A COOPERATIVE GRANT FUNDED BY CDC). "ADVANCED CONSIDERATIONS FOR THE RECOGNITION, APPROPRIATE DIAGNOSIS, AND TIMELY MANAGEMENT OF VWD AND OTHER BLEEDING DISORDERS AMONG WOMEN IN NON-HEMATOLOGY HEALTH CARE SETTINGS" (SUPPORTED BY AN INDEPENDENT GRANT FROM SHIRE, AS WELL AS A COOPERATIVE GRANT FUNDED BY CDC). "IMPROVING OUTCOMES FOR FEMALES WITH BLEEDING DISORDERS IN NON-HEMATOLOGY HEALTHCARE SETTINGS" (SUPPORTED BY AN INDEPENDENT GRANT FROM NOVO NORDISK, INC., AS WELL AS A COOPERATIVE GRANT FUNDED BY CDC).DESIGNED TO INCREASE THE KNOWLEDGE OF HEALTHCARE PROVIDERS ON THE SYMPTOMS AND TREATMENT OPTIONS FOR WOMEN WITH BLEEDING DISORDERS, A TOTAL OF 199 INDIVIDUALS COMPLETED THE THREE WEBINARS IN THE RE-ACCREDITED PERIOD, BRINGING THE GRAND TOTAL SINCE LAUNCH, TO 9,122 PARTICIPANTS OVERALL WITH 467 WEBINAR COMPLETERS, AND 95% REPRESENTING PROVIDERS PRACTICING OUTSIDE THE FIELD OF HEMATOLOGY. 84% OF COMPLETERS REPORTED PLANS TO IMPLEMENT CHANGES TO THEIR PRACTICE OR THAT THE INFORMATION SHARED REINFORCED THEIR CURRENT PRACTICE. AND AMONG THOSE COMPLETERS, AN ESTIMATED 19,760 PATIENTS WOULD BENEFIT FROM THEIR INCREASED KNOWLEDGE AND COMPETENCE BECAUSE OF THIS ACTIVITY.NHF PROVIDED FUNDING AND CREATED EDUCATIONAL CONTENT FOR THOSE WITH RARE FACTOR DEFICIENCIES AND PLATELET DISORDERS AND THEIR FAMILIES VIRTUALLY AT NHF'S 2020 RARE BLEEDING DISORDERS CONFERENCE, SERVING OVER 100 ATTENDEES. NHF ALSO ORGANIZED A VIRTUAL NATIONAL INHIBITOR EDUCATION SUMMIT AND A VIRTUAL SPANISH INHIBITOR SUMMIT, FOR PATIENTS AND FAMILIES EXPERIENCING THE COMPLICATION OF AN INHIBITOR. THESE MULTI-DAY NATIONAL SUMMITS PROVIDED EDUCATION AND PEER CONNECTIONS FOR A TOTAL OF 200 PARTICIPANTS.THE PRIMARY GOALS OF THE NATIONAL HEMOPHILIA FOUNDATION'S (NHF'S) VICTORY FOR WOMEN AND BETTER YOU KNOW PROGRAMS ARE: 1) TO INCREASE AWARENESS TO FACILITATE EARLY AND ACCURATE DIAGNOSES; AND 2) TO PROVIDE AFFECTED WOMEN WITH EDUCATION AND SUPPORT. 2020 HIGHLIGHTS INCLUDED: TRAINING SEVEN COMMUNITY MEMBERS AS BETTER YOU KNOW ADVOCATES TO DO OUTREACH AND PIVOTING TO VIRTUAL PROGRAMMING DURING COVID. THESE PROGRAMS ALSO INCLUDED AN EDUCATIONAL TRACK FOR FEMALE CONSUMERS AT THE NHF 2020 BLEEDING DISORDERS CONFERENCE AND PROVIDING WORKSHOPS/WEBINARS FOR CONSUMERS AT CHAPTER EDUCATION DAYS AND WOMEN'S RETREATS. IN ADDITION, IN 2020, OVER 3,400 WOMEN TOOK THE BETTER YOU KNOW RISK ASSESSMENT TOOL AND 80% HAD SYMPTOMS OF A BLEEDING DISORDER AND OVER 5,400 VISITED VICTORYFORWOMEN.ORG.STEPS FOR LIVING IS A MULTIMEDIA EDUCATIONAL PROGRAM DESIGNED TO INCREASE ACCESS TO AGE AND CULTURALLY APPROPRIATE INFORMATION SO THAT CHILDREN, TEENS, ADULTS, AND FAMILIES CAN MANAGE THE DAILY CHALLENGES OF LIVING WITH A BLEEDING DISORDER. THIS ALSO INCLUDES ENSURING SUCCESSFUL LIFE TRANSITIONS AND PREVENTING SECONDARY COMPLICATIONS. IN 2020, STEPSFORLIVING.HEMOPHILIA.ORG HAD OVER 234,000 SESSIONS AND IS CURRENTLY UNDERGOING A WEBSITE REDESIGN AND REWRITE THAT SHOULD LAUNCH IN LATE 2021. NHF'S EDUCATION FOR EMPOWERMENT PROGRAM BRINGS WORKSHOPS OUT TO LOCAL CHAPTER AND HTC EVENTS AND IN 2020 HAD TO QUICKLY SWITCH TO ALSO PROVIDE AS WEBINARS VIRTUALLY DUE TO COVID. NHF FACILITATED 61 WORKSHOPS/WEBINARS, WITH OVER 850 PARTICIPANTS IN 2020. NEW IN 2020 WERE MULTIPLE TOPICS ON MENTAL HEALTH FOR CHAPTERS TO REQUEST. NHF HAS DESIGNED THE NATIONAL YOUTH LEADERSHIP INSTITUTE (NYLI) TO ASSIST YOUNG PEOPLE FROM THE BLEEDING DISORDERS COMMUNITY TO BECOME WELL-TRAINED, RECOGNIZED LEADERS. NHF ACHIEVES THESE OUTCOMES BY PROVIDING YOUNG ADULTS WITH TRAINING, SUPPORT AND OPPORTUNITIES TO PROVIDE EDUCATION TO THE BLEEDING DISORDERS COMMUNITY. IN 2020, NHF PROVIDED TRAININGS TO THE 25 MEMBERS OF NYLI ON TOPICS INCLUDING PUBLIC SPEAKING, ADVOCACY, NON-PROFIT MANAGEMENT AND FUNDRAISING. NYLI MEMBERS PROVIDED EDUCATIONAL SESSIONS, ADVOCATED ON BEHALF THEIR STATES WASHINGTON, D.C., LED PEER EDUCATION PROGRAMS FOR TEENS, AND FACILITATED SESSIONS AT NATIONAL MEETINGS. NHF DEVELOPED NUMEROUS EDUCATIONAL COMPONENTS TO ITS GENE AND INNOVATIVE THERAPIES PROGRAMMING TO ENSURE THAT COMMUNITY MEMBERS ARE AWARE OF THE LATEST TREATMENTS IN THE PIPELINE AND HOW TO HAVE CONVERSATIONS WITH THEIR HEALTHCARE PROVIDERS FOR THE BEST TREATMENT DECISIONS. THE WEBPAGES HAD OVER 9,000 HITS, AND THE WEBINARS HAD OVER 1,600 ATTENDEES.	Desc

Prog Srvc Accom Acty3 ProgSrvcAccomActy3Grp

Field	Value	IRS element (for citing)
Expense	$2,945,656	ExpenseAmt
Grant	$1,473,288	GrantAmt
Desc	RESEARCHNHF AWARDED TWO (2) NHF/TAKEDA CLINICAL FELLOWSHIPS IN 2020. ONE FELLOWSHIP AWARD WAS BESTOWED TO DR. MARY MCGRATH OF THE UNIVERSITY OF MICHIGAN, AND THE OTHER AWARD WENT TO DR. PATRICK ELLSWORTH OF THE UNIVERSITY OF NORTH CAROLINA AT CHAPEL HILL. THE NHF-TAKEDA CLINICAL FELLOWSHIP PROGRAM PROVIDES UP TO $100,000 PER YEAR FOR TWO YEARS TO AT LEAST TWO FELLOWS CHOSEN FROM AMONG NOMINATIONS SUBMITTED BY MENTORS/DIRECTORS FROM APPROVED FELLOWSHIP TRAINING SITES. THE NHF NURSING EXCELLENCE FELLOWSHIP WAS AWARDED TO NURSE AMANDA GREENE OF EMORY UNIVERSITY & CHILDREN'S HEALTHCARE OF ATLANTA IN ATLANTA, GEORGIA FOR HER PROJECT, "RETROSPECTIVE CHART REVIEW OF JOINT OUTCOMES AND HOSPITAL UTILIZATION FOR PERSONS WITH HEMOPHILIA A (WITH AND WITHOUT INHIBITORS) WHO WERE SWITCHED TO EMICIZUMAB FOR TREATMENT PROPHYLAXIS." THE NHF SOCIAL WORK EXCELLENCE FELLOWSHIP WAS AWARDED TO SOCIAL WORKER KATHALEEN SCHNUR AT THE HEMOPHILIA CENTER OF WESTERN PENNSYLVANIA FOR HER PROJECT TO SURVEY SOCIAL WORKERS AT HEMOPHILIA TREATMENT CENTERS (HTC) REGARDING THEIR ROLES IN THE HTC MODEL. THE NHF PHYSICAL THERAPY EXCELLENCE FELLOWSHIP WAS AWARDED TO PHYSICAL THERAPIST NANCY DURBEN AT THE OREGON HEALTH AND SCIENCE UNIVERSITY FOR HER PROJECT, "MINDFUL YOGA FOR PEOPLE WITH BLEEDING DISORDERS AND CHRONIC PAIN."A TOTAL OF THREE (3) NHF JUDITH GRAHAM POOL POSTDOCTORAL RESEARCH FELLOWSHIPS WERE AWARDED TO THE FOLLOWING INSTITUTIONS AND RESEARCHERS RESPECTIVELY: DR. XUEJIE CHEN AT THE UNIVERSITY OF NORTH CAROLINA CHAPEL HILL FOR THE PROJECT "INCREASING THE EFFICACY OF PROPHYLACTIC INFUSED FIX IN HEMOPHILIA B PATIENTS BY MANIPULATING ITS BINDING TO COLLAGEN IV", DR. KAUSHIK DAS, AT THE UNIVERSITY OF TEXAS HEALTH SCIENCE CENTER AT TYLER FOR THE PROJECT "THE ROLE OF FVIIA-RELEASED ENDOTHELIAL EXTRACELLULAR VESICLES IN HEMOPHILIA THERAPY", AND DR. JHANSI MAGISETTY AT THE UNIVERSITY OF TEXAS HEALTH SCIENCE CENTER AT TYLER FOR THE PROJECT, "THE ROLE OF EPCR-FVIIA IN THE PATHOGENESIS AND TREATMENT OF HEMOPHILIC ARTHROPATHY."THE INNOVATIVE INVESTIGATOR RESEARCH AWARD (IIRA) PROVIDES RESEARCH AWARDS TO ANY HEALTH CARE PROVIDER ON A MULTI-DISCIPLINARY TEAM WITHIN THE HEMOPHILIA TREATMENT CENTER (HTC) NETWORK FOR INNOVATIVE PROJECTS THAT PROMOTE THE DEVELOPMENT OF NOVEL TECHNOLOGIES AND/OR THERAPIES TO ADVANCE THE FIELD OF BLEEDING DISORDERS RESEARCH. ONE IIRA WAS AWARDED IN 2020 TO THE FOLLOWING INSTITUTION AND RESEARCHER RESPECTIVELY: DR. COURTNEY THORNBURG AT UNIVERSITY OF CALIFORNIA, SAN DIEGO DEPARTMENT OF PEDIATRIC HEMATOLOGY/ONCOLOGY FOR THE PROJECT "GENE THERAPY FOR HEMOPHILIA: PATIENT PREFERENCES AND SHARED-DECISION MAKING." ONE CAREER DEVELOPMENT AWARD (CDA) WAS AWARDED TO DR. ZE ZHENG FOR THE PROJECT TITLED, "REDUCING SEVERE BLEEDING SYMPTOMS IN HEMOPHILIA BY LOWERING FIBRINOLYSIS". THIS AWARD IS FOR AN ESTABLISHED INVESTIGATOR, PREFERABLY AT THE ASSISTANT PROFESSOR LEVEL OR ABOVE, WHO HAS DEMONSTRATED A COMMITMENT TO BLEEDING DISORDERS RESEARCH. IN ADDITION, NHF CONTINUED TO SUPPORT SEVERAL RESEARCH INITIATIVES:CAMP SURVEY: THIS PROJECT IDENTIFIED GAPS IN CARE AND UNDERSTAND HOW CAMPS FUNCTION AND THE ROLE THEY SERVE IN THE COMMUNITY. PAIN PRACTICES SURVEY: THIS HELPED UNDERSTAND HOW PAIN IS MANAGED WITHIN THE BLEEDING DISORDERS COMMUNITY AND HOW THE HTC SYSTEM HAS ADAPTED TO THE 2016 CDC PAIN GUIDELINES. TELEGENETIC SURVEY: THIS SURVEY SERVED WOMEN AND ADOLESCENT GIRLS WHO PARTICIPATED IN THE MY LIFE OUR FUTURE WOMEN'S PILOT STUDY AND RECEIVED GENETIC TESTING BUT NOT GENETIC COUNSELING VIA TELEMEDICINE. RESULTS WERE TABULATED AND PRESENTED AT THE WORLD FEDERATION OF HEMOPHILIA CONGRESS IN KUALA LAMPUR, MALAYSIA, IN 2020.CVR (COMMUNITY VOICES IN RESEARCH): A PATIENT POWERED REGISTRY INTENDED TO CAPTURE A 360-DEGREE VIEW OF LIVING WITH A BLEEDING DISORDER, DIRECTLY FROM THOSE AFFECTED AND THEIR RELATIVES TO ENHANCE THE ABILITY OF RESEARCHERS TO IMPROVE QUALITY OF LIFE (QOL). CVR EXAMINES CURRENT TREATMENTS, IDENTIFIES RESEARCH QUESTIONS IMPORTANT TO COMMUNITY MEMBERS, AND DISCOVERS TRANSFORMATIONAL THERAPIES. QI PROJECT: THIS PILOT PROGRAM REFINES A LOGGING PLATFORM BASED ON FEEDBACK FROM THE NORTHERN REGIONAL BLEEDING DISORDERS CENTER (NRBDC) AND WESTERN NEW YORK BLOODCARE (WNY) HTC PARTICIPANTS USING CONTINUED EVALUATIONS TO MEASURE EASE OF USE AND PATIENT SATISFACTION WITH THE AUDAIRE SMARTPHONE APPLICATION AT TWO WEEKS, THREE MONTHS, AND SIX MONTHS AFTER IMPLEMENTATION AND TO DESCRIBE CLOTTING FACTOR ASSAY MANAGEMENT UTILIZING THIS PLATFORM.	Desc

Prog Srvc Accom Acty Other ProgSrvcAccomActyOtherGrp

Field	Value	IRS element (for citing)
Expense	$1,295,192	ExpenseAmt
Grant	$92,777	GrantAmt
Desc	CHAPTER SERVICES NHF'S CHAPTER SERVICES DEPARTMENT PROVIDES COMMUNITY SUPPORT BY HELPING ITS 53 MEMBER CHAPTERS OFFER EDUCATION, RESOURCES, AND REFERRALS TO AFFECTED MEMBERS OF THE INHERITABLE BLOOD DISORDERS COMMUNITY IN THE REGIONAL AREAS THAT EACH CHAPTER SERVES. CHAPTER SERVICES OFFERS THE CHAPTERS FINANCIAL SUPPORT IN THE FORM OF GRANTS, SPONSORS TRAINING MEETINGS, AND PROVIDES SOME HOTEL EXPENSE SUPPORT FOR ADVOCACY MEETINGS. DEPARTMENT STAFF MEMBERS COACH CHAPTER LEADERS ON HOW TO CREATE, EXECUTE AND EVALUATE PROGRAMS AND SERVICES DESIGNED FOR THEIR AFFECTED CONSTITUENTS. IN 2020 CHAPTER SERVICES HELD ONE NATIONAL LEADERSHIP SEMINAR OFFERING TRAINING THAT FOCUSED ON DIVERSIFICATION OF FUNDING STRATEGIES, BOARD DEVELOPMENT, BUILDING COMMUNITY OF VOLUNTEERS AND ADVOCATES, AND MORE. A FULL "CHAPTER TRAINING TRACK" WAS ALSO OFFERED DURING NHF'S 2020 VIRTUAL BLEEDING DISORDERS CONFERENCE.	Desc

Field	Value	IRS element (for citing)
Total Other Prog Srvc Expense	$1,295,192	TotalOtherProgSrvcExpenseAmt
Total Other Prog Srvc Grant	$92,777	TotalOtherProgSrvcGrantAmt
Total Program Service Expenses	$14,006,632	TotalProgramServiceExpensesAmt
Described In Section501c3	Yes (1)	DescribedInSection501c3Ind
Schedule B Required	Yes (1)	ScheduleBRequiredInd
Political Campaign Acty	0	PoliticalCampaignActyInd
Lobbying Activities	Yes (1)	LobbyingActivitiesInd
Subject To Proxy Tax	0	SubjectToProxyTaxInd
Donor Advised Fund	0	DonorAdvisedFundInd
Conservation Easements	0	ConservationEasementsInd
Collections Of Art	0	CollectionsOfArtInd
Credit Counseling	0	CreditCounselingInd
Donor Rstr Or Quasi Endowments	Yes (1)	DonorRstrOrQuasiEndowmentsInd
Report Land Building Equipment	Yes (1)	ReportLandBuildingEquipmentInd
Report Investments Other Sec	Yes (1)	ReportInvestmentsOtherSecInd
Report Program Related Invst	0	ReportProgramRelatedInvstInd
Report Other Assets	0	ReportOtherAssetsInd
Report Other Liabilities	Yes (1)	ReportOtherLiabilitiesInd
Include FIN48 Footnote	Yes (1)	IncludeFIN48FootnoteInd
Independent Audit Fincl Stmt	Yes (1)	IndependentAuditFinclStmtInd
Consolidated Audit Fincl Stmt	0	ConsolidatedAuditFinclStmtInd
School Operating	0	SchoolOperatingInd
Foreign Office	0	ForeignOfficeInd
Foreign Activities	0	ForeignActivitiesInd
More Than5000 K To Org	Yes (1)	MoreThan5000KToOrgInd
More Than5000 K To Individuals	0	MoreThan5000KToIndividualsInd
Professional Fundraising	0	ProfessionalFundraisingInd
Fundraising Activities	Yes (1)	FundraisingActivitiesInd
Gaming Activities	0	GamingActivitiesInd
Operate Hospital	0	OperateHospitalInd
Grants To Organizations	Yes (1)	GrantsToOrganizationsInd
Grants To Individuals	Yes (1)	GrantsToIndividualsInd
Schedule J Required	Yes (1)	ScheduleJRequiredInd
Tax Exempt Bonds	0	TaxExemptBondsInd
Engaged In Excess Benefit Trans	0	EngagedInExcessBenefitTransInd
PY Excess Benefit Trans	0	PYExcessBenefitTransInd
Loan Outstanding	0	LoanOutstandingInd
Grant To Related Person	0	GrantToRelatedPersonInd
Business Rln With Org Mem	0	BusinessRlnWithOrgMemInd
Business Rln With Fam Mem	0	BusinessRlnWithFamMemInd
Business Rln With35 Ctrl Ent	0	BusinessRlnWith35CtrlEntInd
Deductible Non Cash Contri	0	DeductibleNonCashContriInd
Deductible Art Contribution	0	DeductibleArtContributionInd
Terminate Operations	0	TerminateOperationsInd
Partial Liquidation	0	PartialLiquidationInd
Disregarded Entity	0	DisregardedEntityInd
Related Entity	0	RelatedEntityInd
Related Organization Ctrl Ent	0	RelatedOrganizationCtrlEntInd
Trnsfr Exmpt Non Chrtbl Rltd Org	0	TrnsfrExmptNonChrtblRltdOrgInd
Activities Conducted Prtshp	0	ActivitiesConductedPrtshpInd
Schedule O Required	Yes (1)	ScheduleORequiredInd
IRP Document	98	IRPDocumentCnt
IRP Document W2 G	0	IRPDocumentW2GCnt
Employee	83	EmployeeCnt
Employment Tax Returns Filed	Yes (1)	EmploymentTaxReturnsFiledInd
Unrelated Bus Incm Over Limit	Yes (1)	UnrelatedBusIncmOverLimitInd
Form990 T Filed	Yes (1)	Form990TFiledInd
Foreign Financial Account	0	ForeignFinancialAccountInd
Prohibited Tax Shelter Trans	0	ProhibitedTaxShelterTransInd
Taxable Party Notification	0	TaxablePartyNotificationInd
Nondeductible Contributions	0	NondeductibleContributionsInd
Quid Pro Quo Contributions	0	QuidProQuoContributionsInd
Form8282 Property Disposed Of	0	Form8282PropertyDisposedOfInd
Rcv Fnds To Pay Prsnl Bnft Cntrct	0	RcvFndsToPayPrsnlBnftCntrctInd
Pay Premiums Prsnl Bnft Cntrct	0	PayPremiumsPrsnlBnftCntrctInd
Indoor Tanning Services	0	IndoorTanningServicesInd
Subj To Tax Rmnrtn Ex Prcht Pymt	0	SubjToTaxRmnrtnExPrchtPymtInd
Subject To Excs Tax Net Invst Inc	0	SubjectToExcsTaxNetInvstIncInd
Info In Schedule O Part VI	Yes (X)	InfoInScheduleOPartVIInd
Governing Body Voting Members	13	GoverningBodyVotingMembersCnt
Independent Voting Member	13	IndependentVotingMemberCnt
Family Or Business Rln	0	FamilyOrBusinessRlnInd
Delegation Of Mgmt Duties	0	DelegationOfMgmtDutiesInd
Change To Org Documents	0	ChangeToOrgDocumentsInd
Material Diversion Or Misuse	0	MaterialDiversionOrMisuseInd
Members Or Stockholders	Yes (1)	MembersOrStockholdersInd
Election Of Board Members	Yes (1)	ElectionOfBoardMembersInd
Decisions Subject To Approva	0	DecisionsSubjectToApprovaInd
Minutes Of Governing Body	Yes (1)	MinutesOfGoverningBodyInd
Minutes Of Committees	Yes (1)	MinutesOfCommitteesInd
Officer Mailing Address	0	OfficerMailingAddressInd
Local Chapters	Yes (1)	LocalChaptersInd
Policies Reference Chapters	Yes (1)	PoliciesReferenceChaptersInd
Form990 Provided To Gvrn Body	Yes (1)	Form990ProvidedToGvrnBodyInd
Conflict Of Interest Policy	Yes (1)	ConflictOfInterestPolicyInd
Annual Disclosure Covered Prsn	Yes (1)	AnnualDisclosureCoveredPrsnInd
Regular Monitoring Enfrc	Yes (1)	RegularMonitoringEnfrcInd
Whistleblower Policy	Yes (1)	WhistleblowerPolicyInd
Document Retention Policy	Yes (1)	DocumentRetentionPolicyInd
Compensation Process CEO	Yes (1)	CompensationProcessCEOInd
Compensation Process Other	Yes (1)	CompensationProcessOtherInd
Investment In Joint Venture	0	InvestmentInJointVentureInd
States Where Copy Of Return Is Fld	AL	StatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is Fld	AK	StatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is Fld	AR	StatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is Fld	CA	StatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is Fld	CO	StatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is Fld	CT	StatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is Fld	KS	StatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is Fld	FL	StatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is Fld	GA	StatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is Fld	HI	StatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is Fld	IL	StatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is Fld	KY	StatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is Fld	ME	StatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is Fld	MD	StatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is Fld	MA	StatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is Fld	MI	StatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is Fld	MN	StatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is Fld	MS	StatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is Fld	MO	StatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is Fld	NH	StatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is Fld	NJ	StatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is Fld	NM	StatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is Fld	NY	StatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is Fld	NC	StatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is Fld	ND	StatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is Fld	OH	StatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is Fld	OK	StatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is Fld	RI	StatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is Fld	SC	StatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is Fld	TN	StatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is Fld	VA	StatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is Fld	WA	StatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is Fld	WV	StatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is Fld	WI	StatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is Fld	UT	StatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is Fld	PA	StatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is Fld	OR	StatesWhereCopyOfReturnIsFldCd
Own Website	Yes (X)	OwnWebsiteInd
Upon Request	Yes (X)	UponRequestInd

Books In Care Of Detail BooksInCareOfDetail

Business Name BusinessName

Field	Value	IRS element (for citing)
Business Name Line1	PETER HARVEY	BusinessNameLine1Txt

Field	Value	IRS element (for citing)
Phone	2123283700	PhoneNum

US Address USAddress

Field	Value	IRS element (for citing)
Address Line1	7 PENNSYLVANIA PLAZA SUITE 1204	AddressLine1Txt
City	NEW YORK	CityNm
State Abbreviation	NY	StateAbbreviationCd
ZIP	10001	ZIPCd

Form990 Part VII Section A Form990PartVIISectionAGrp (25 entries)

TitleTitleTxt	Average Hours Per WeekAverageHoursPerWeekRt	Individual Trustee Or DirectorIndividualTrusteeOrDirectorInd	OfficerOfficerInd	Reportable Comp From OrgReportableCompFromOrgAmt	Reportable Comp From Rltd OrgReportableCompFromRltdOrgAmt	Other CompensationOtherCompensationAmt	Highest Compensated EmployeeHighestCompensatedEmployeeInd	Former Ofcr Director TrusteeFormerOfcrDirectorTrusteeInd
SCOTT MILLER
CHAIR	10.00	Yes (X)	Yes (X)	$0	$0	$0
SCOTT MARTIN
VICE-CHAIR	10.00	Yes (X)	Yes (X)	$0	$0	$0
JAMES A HEER
TREASURER	10.00	Yes (X)	Yes (X)	$0	$0	$0
LYNNE CAPRETTO
SECRETARY	10.00	Yes (X)	Yes (X)	$0	$0	$0
GARY D FARRO
DIRECTOR, THRU 10/2/2020	10.00	Yes (X)		$0	$0	$0
BRIAN ANDREW
DIRECTOR	10.00	Yes (X)		$0	$0	$0
MARK BORRELIZ
DIRECTOR	10.00	Yes (X)		$0	$0	$0
JOHN FARIA
DIRECTOR	10.00	Yes (X)		$0	$0	$0
RYAN GRIFFITH
DIRECTOR	10.00	Yes (X)		$0	$0	$0
SUSAN HARTMANN
DIRECTOR	10.00	Yes (X)		$0	$0	$0
CINDY KOMAR
DIRECTOR	10.00	Yes (X)		$0	$0	$0
PATRICK MANCINI
DIRECTOR	10.00	Yes (X)		$0	$0	$0
DERICK STACE-NAUGHTON
DIRECTOR	10.00	Yes (X)		$0	$0	$0
ZIVA MANN
DIRECTOR	10.00	Yes (X)		$0	$0	$0
LEONARD VALENTINO
PRESIDENT & CHIEF EXECUTIVE OFFICER	40.00		Yes (X)	$270,716	$0	$10,633
SANDRA D ROTELLINI
CHIEF OPERATING OFFICER	40.00		Yes (X)	$201,791	$0	$41,102
JORDANA ZEGER
CHIEF FISCAL OFFICER	40.00		Yes (X)	$279,322	$0	$36,055
MICHELLE RICE
CHIEF EXTERNAL AFFAIRS OFFICER	40.00		Yes (X)	$192,215	$0	$54,043
PETER HARVEY
CHIEF BUSINESS OFFICER	40.00		Yes (X)	$80,446	$0	$5,356
MICHELLE WITKOP
HEAD OF RESEARCH	40.00			$178,418	$0	$37,770	Yes (X)
BRETT SPITALE
V.P. OF ADVANCEMENT	40.00			$178,209	$0	$55,188	Yes (X)
NEIL FRICK
S.V.P. OF RESEARCH & MEDICAL INFORMATION	40.00			$171,272	$0	$36,926	Yes (X)
ANNA SPROVSKAYA
CONTROLLER	40.00			$160,301	$0	$35,243	Yes (X)
TIMOTHY BRENT
SENIOR DIRECTOR OF BUSINESS DEVELOPMENT	40.00			$156,587	$0	$45,730	Yes (X)
VAL BIAS
FORMER CHIEF EXECUTIVE OFFICER	0.00			$373,362	$0	$38,097		Yes (X)

Field	Value	IRS element (for citing)
Total Reportable Comp From Org	$2,242,639	TotalReportableCompFromOrgAmt
Tot Reportable Comp Rltd Org	$0	TotReportableCompRltdOrgAmt
Total Other Compensation	$396,143	TotalOtherCompensationAmt
Indiv Rcvd Greater Than100 K	21	IndivRcvdGreaterThan100KCnt
Former Ofcr Employees Listed	Yes (1)	FormerOfcrEmployeesListedInd
Total Comp Greater Than150 K	Yes (1)	TotalCompGreaterThan150KInd
Compensation From Other Srcs	0	CompensationFromOtherSrcsInd

Contractor Compensation ContractorCompensationGrp (5 entries)

Address Line1ContractorAddress/USAddress/AddressLine1Txt	CityContractorAddress/USAddress/CityNm	State AbbreviationContractorAddress/USAddress/StateAbbreviationCd	ZIPContractorAddress/USAddress/ZIPCd	ServicesServicesDesc	CompensationCompensationAmt	Address Line1ContractorAddress/ForeignAddress/AddressLine1Txt	CityContractorAddress/ForeignAddress/CityNm	Province Or StateContractorAddress/ForeignAddress/ProvinceOrStateNm	CountryContractorAddress/ForeignAddress/CountryCd
IMPACT EDUCATION LLC
589 SKIPPACK PIKE SUITE 200	BLUE BELL	PA	19422	CONSULTANT FOR MEDICAL EDUCATION	$1,054,194
MANIFEST LLC
4110 N SCOTTSDALE ROAD SUITE 315	SCOTTSDALE	AZ	85251	PRODUCTION/HEMAWARE PUBLICATION	$510,556
ARBORMETRIX INC
339 E LIBERTY STREET SUITE 210	ANN ARBOR	MI	48104	PATIENT RESEARCH REGISTRY	$285,000
CCR SOLUTIONS INC
4351 35TH STREET	ORLANDO	FL	32811	VIRTUAL TECHNOLOGY SERVICES	$215,440
IMAGEX MEDIA INC
				WEBSITE DEVELOPMENT SERVICES	$164,576	405-163 W HASTINGS ST	VANCOUVER	BC	CA

Field	Value	IRS element (for citing)
Cntrct Rcvd Greater Than100 K	11	CntrctRcvdGreaterThan100KCnt
Federated Campaigns	$13,861	FederatedCampaignsAmt
Fundraising	$1,608,045	FundraisingAmt
Government Grants	$599,443	GovernmentGrantsAmt
All Other Contributions	$17,588,805	AllOtherContributionsAmt
Noncash Contributions	$674	NoncashContributionsAmt
Total Contributions	$19,810,154	TotalContributionsAmt

Program Service Revenue ProgramServiceRevenueGrp (2 entries)

DescDesc	BusinessBusinessCd	Total Revenue ColumnTotalRevenueColumnAmt	Unrelated Business RevenueUnrelatedBusinessRevenueAmt	Related Or Exempt Func IncomeRelatedOrExemptFuncIncomeAmt
ADVERTISING	541800	$1,234,783	$1,234,783
EDUCATION SEMINARS	611710	$9,600		$9,600

Field	Value	IRS element (for citing)
Total Program Service Revenue	$1,244,383	TotalProgramServiceRevenueAmt

Investment Income InvestmentIncomeGrp

Field	Value	IRS element (for citing)
Total Revenue Column	$730,271	TotalRevenueColumnAmt
Exclusion	$730,271	ExclusionAmt

Gross Amount Sales Assets GrossAmountSalesAssetsGrp

Field	Value	IRS element (for citing)
Securities	$8,982,424	SecuritiesAmt

Less Cost Oth Basis Sales Expnss LessCostOthBasisSalesExpnssGrp

Field	Value	IRS element (for citing)
Securities	$8,535,978	SecuritiesAmt

Gain Or Loss GainOrLossGrp

Field	Value	IRS element (for citing)
Securities	$446,446	SecuritiesAmt

Net Gain Or Loss Investments NetGainOrLossInvestmentsGrp

Field	Value	IRS element (for citing)
Total Revenue Column	$446,446	TotalRevenueColumnAmt
Exclusion	$446,446	ExclusionAmt

Field	Value	IRS element (for citing)
Fundraising Gross Income	$3,560	FundraisingGrossIncomeAmt
Contri Rpt Fundraising Event	$1,608,045	ContriRptFundraisingEventAmt
Fundraising Direct Expenses	$775,681	FundraisingDirectExpensesAmt

Net Incm From Fundraising Evt NetIncmFromFundraisingEvtGrp

Field	Value	IRS element (for citing)
Total Revenue Column	-$772,121	TotalRevenueColumnAmt
Exclusion	-$772,121	ExclusionAmt

Other Revenue Misc OtherRevenueMiscGrp

Field	Value	IRS element (for citing)
Desc	MISCELLANEOUS	Desc
Business	611710	BusinessCd
Total Revenue Column	$26,071	TotalRevenueColumnAmt
Exclusion	$26,071	ExclusionAmt

Field	Value	IRS element (for citing)
Other Revenue Total	$26,071	OtherRevenueTotalAmt

Total Revenue TotalRevenueGrp

Field	Value	IRS element (for citing)
Total Revenue Column	$21,485,204	TotalRevenueColumnAmt
Related Or Exempt Func Income	$9,600	RelatedOrExemptFuncIncomeAmt
Unrelated Business Revenue	$1,234,783	UnrelatedBusinessRevenueAmt
Exclusion	$430,667	ExclusionAmt

Field	Value	IRS element (for citing)
Info In Schedule O Part IX	Yes (X)	InfoInScheduleOPartIXInd

Grants To Domestic Orgs GrantsToDomesticOrgsGrp

Field	Value	IRS element (for citing)
Total	$2,227,802	TotalAmt
Program Services	$2,227,802	ProgramServicesAmt

Grants To Domestic Individuals GrantsToDomesticIndividualsGrp

Field	Value	IRS element (for citing)
Total	$122,569	TotalAmt
Program Services	$122,569	ProgramServicesAmt

Foreign Grants ForeignGrantsGrp

Field	Value	IRS element (for citing)
Total	$20,000	TotalAmt
Program Services	$20,000	ProgramServicesAmt

Comp Current Ofcr Directors CompCurrentOfcrDirectorsGrp

Field	Value	IRS element (for citing)
Total	$1,085,875	TotalAmt
Program Services	$639,093	ProgramServicesAmt
Management And General	$339,092	ManagementAndGeneralAmt
Fundraising	$107,690	FundraisingAmt

Comp Disqual Persons CompDisqualPersonsGrp

Field	Value	IRS element (for citing)
Total	$411,459	TotalAmt
Program Services	$241,353	ProgramServicesAmt
Management And General	$128,439	ManagementAndGeneralAmt
Fundraising	$41,667	FundraisingAmt

Other Salaries And Wages OtherSalariesAndWagesGrp

Field	Value	IRS element (for citing)
Total	$5,603,876	TotalAmt
Program Services	$3,485,062	ProgramServicesAmt
Management And General	$1,865,520	ManagementAndGeneralAmt
Fundraising	$253,294	FundraisingAmt

Pension Plan Contributions PensionPlanContributionsGrp

Field	Value	IRS element (for citing)
Total	$409,554	TotalAmt
Program Services	$263,095	ProgramServicesAmt
Management And General	$131,333	ManagementAndGeneralAmt
Fundraising	$15,126	FundraisingAmt

Other Employee Benefits OtherEmployeeBenefitsGrp

Field	Value	IRS element (for citing)
Total	$1,069,124	TotalAmt
Program Services	$680,100	ProgramServicesAmt
Management And General	$341,426	ManagementAndGeneralAmt
Fundraising	$47,598	FundraisingAmt

Payroll Taxes PayrollTaxesGrp

Field	Value	IRS element (for citing)
Total	$482,865	TotalAmt
Program Services	$303,547	ProgramServicesAmt
Management And General	$152,388	ManagementAndGeneralAmt
Fundraising	$26,930	FundraisingAmt

Fees For Services Legal FeesForServicesLegalGrp

Field	Value	IRS element (for citing)
Total	$73,952	TotalAmt
Program Services	$18,045	ProgramServicesAmt
Management And General	$55,907	ManagementAndGeneralAmt

Fees For Services Accounting FeesForServicesAccountingGrp

Field	Value	IRS element (for citing)
Total	$44,500	TotalAmt
Management And General	$44,500	ManagementAndGeneralAmt

Fees For Services Lobbying FeesForServicesLobbyingGrp

Field	Value	IRS element (for citing)
Total	$198,000	TotalAmt
Program Services	$198,000	ProgramServicesAmt

Fees For Srvc Invst Mgmnt Fees FeesForSrvcInvstMgmntFeesGrp

Field	Value	IRS element (for citing)
Total	$35,292	TotalAmt
Management And General	$35,292	ManagementAndGeneralAmt

Fees For Services Other FeesForServicesOtherGrp

Field	Value	IRS element (for citing)
Total	$3,254,641	TotalAmt
Program Services	$2,706,532	ProgramServicesAmt
Management And General	$532,057	ManagementAndGeneralAmt
Fundraising	$16,052	FundraisingAmt

Advertising AdvertisingGrp

Field	Value	IRS element (for citing)
Total	$29,244	TotalAmt
Program Services	$24,815	ProgramServicesAmt
Management And General	$4,429	ManagementAndGeneralAmt

Office Expenses OfficeExpensesGrp

Field	Value	IRS element (for citing)
Total	$335,254	TotalAmt
Program Services	$207,395	ProgramServicesAmt
Management And General	$89,458	ManagementAndGeneralAmt
Fundraising	$38,401	FundraisingAmt

Information Technology InformationTechnologyGrp

Field	Value	IRS element (for citing)
Total	$331,822	TotalAmt
Program Services	$235,975	ProgramServicesAmt
Management And General	$86,009	ManagementAndGeneralAmt
Fundraising	$9,838	FundraisingAmt

Occupancy OccupancyGrp

Field	Value	IRS element (for citing)
Total	$702,242	TotalAmt
Program Services	$450,820	ProgramServicesAmt
Management And General	$208,986	ManagementAndGeneralAmt
Fundraising	$42,436	FundraisingAmt

Conferences Meetings ConferencesMeetingsGrp

Field	Value	IRS element (for citing)
Total	$947,622	TotalAmt
Program Services	$864,944	ProgramServicesAmt
Management And General	$50,483	ManagementAndGeneralAmt
Fundraising	$32,195	FundraisingAmt

Depreciation Depletion DepreciationDepletionGrp

Field	Value	IRS element (for citing)
Total	$57,530	TotalAmt
Program Services	$40,760	ProgramServicesAmt
Management And General	$13,117	ManagementAndGeneralAmt
Fundraising	$3,653	FundraisingAmt

Insurance InsuranceGrp

Field	Value	IRS element (for citing)
Total	$44,223	TotalAmt
Program Services	$31,772	ProgramServicesAmt
Management And General	$9,469	ManagementAndGeneralAmt
Fundraising	$2,982	FundraisingAmt

Other Expenses OtherExpensesGrp (4 entries)

DescDesc	TotalTotalAmt	Program ServicesProgramServicesAmt	Management And GeneralManagementAndGeneralAmt	FundraisingFundraisingAmt
UNRELATED BUSINESS INCO	$35,203	$33,197	$239	$1,767
STATIONERY AND PRINTING	$705,219	$671,102	$4,822	$29,295
MEMBERSHIP DUES	$415,954	$196,217	$154,454	$65,283
PROGRAM SUPPLIES	$238,275	$212,472	$18,175	$7,628

All Other Expenses AllOtherExpensesGrp

Field	Value	IRS element (for citing)
Total	$155,588	TotalAmt
Program Services	$131,965	ProgramServicesAmt
Management And General	$15,937	ManagementAndGeneralAmt
Fundraising	$7,686	FundraisingAmt

Total Functional Expenses TotalFunctionalExpensesGrp

Field	Value	IRS element (for citing)
Total	$19,037,685	TotalAmt
Program Services	$14,006,632	ProgramServicesAmt
Management And General	$4,281,532	ManagementAndGeneralAmt
Fundraising	$749,521	FundraisingAmt

Cash Non Interest Bearing CashNonInterestBearingGrp

Field	Value	IRS element (for citing)
BOY	$2,542,770	BOYAmt
EOY	$3,640,103	EOYAmt

Savings And Temp Cash Invst SavingsAndTempCashInvstGrp

Field	Value	IRS element (for citing)
BOY	$7,270,612	BOYAmt
EOY	$9,333,019	EOYAmt

Pledges And Grants Receivable PledgesAndGrantsReceivableGrp

Field	Value	IRS element (for citing)
BOY	$2,387,220	BOYAmt
EOY	$1,011,638	EOYAmt

Prepaid Expenses Defrd Charges PrepaidExpensesDefrdChargesGrp

Field	Value	IRS element (for citing)
BOY	$479,364	BOYAmt
EOY	$559,535	EOYAmt

Field	Value	IRS element (for citing)
Land Bldg Equip Cost Or Other Bss	$524,314	LandBldgEquipCostOrOtherBssAmt
Land Bldg Equip Accum Deprec	$307,639	LandBldgEquipAccumDeprecAmt

Land Bldg Equip Basis Net LandBldgEquipBasisNetGrp

Field	Value	IRS element (for citing)
BOY	$164,877	BOYAmt
EOY	$216,675	EOYAmt

Investments Other Securities InvestmentsOtherSecuritiesGrp

Field	Value	IRS element (for citing)
BOY	$19,876,536	BOYAmt
EOY	$23,098,209	EOYAmt

Other Assets Total OtherAssetsTotalGrp

Field	Value	IRS element (for citing)
BOY	$818,807	BOYAmt
EOY	$952,465	EOYAmt

Total Assets TotalAssetsGrp

Field	Value	IRS element (for citing)
BOY	$33,540,186	BOYAmt
EOY	$38,811,644	EOYAmt

Accounts Payable Accr Expnss AccountsPayableAccrExpnssGrp

Field	Value	IRS element (for citing)
BOY	$2,373,878	BOYAmt
EOY	$1,829,414	EOYAmt

Grants Payable GrantsPayableGrp

Field	Value	IRS element (for citing)
BOY	$928,000	BOYAmt
EOY	$1,126,769	EOYAmt

Deferred Revenue DeferredRevenueGrp

Field	Value	IRS element (for citing)
BOY	$56,179	BOYAmt
EOY	$91,822	EOYAmt

Other Liabilities OtherLiabilitiesGrp

Field	Value	IRS element (for citing)
BOY	$932,479	BOYAmt
EOY	$2,443,162	EOYAmt

Total Liabilities TotalLiabilitiesGrp

Field	Value	IRS element (for citing)
BOY	$4,290,536	BOYAmt
EOY	$5,491,167	EOYAmt

Field	Value	IRS element (for citing)
Organization Follows FASB117	Yes (X)	OrganizationFollowsFASB117Ind

No Donor Restriction Net Assets NoDonorRestrictionNetAssetsGrp

Field	Value	IRS element (for citing)
BOY	$21,133,500	BOYAmt
EOY	$24,106,324	EOYAmt

Donor Restriction Net Assets DonorRestrictionNetAssetsGrp

Field	Value	IRS element (for citing)
BOY	$8,116,150	BOYAmt
EOY	$9,214,153	EOYAmt

Total Net Assets Fund Balance TotalNetAssetsFundBalanceGrp

Field	Value	IRS element (for citing)
BOY	$29,249,650	BOYAmt
EOY	$33,320,477	EOYAmt

Tot Liab Net Assets Fund Balance TotLiabNetAssetsFundBalanceGrp

Field	Value	IRS element (for citing)
BOY	$33,540,186	BOYAmt
EOY	$38,811,644	EOYAmt

Field	Value	IRS element (for citing)
Reconcilation Revenue Expnss	$2,447,519	ReconcilationRevenueExpnssAmt
Net Unrlzd Gains Losses Invst	$1,623,308	NetUnrlzdGainsLossesInvstAmt
Other Changes In Net Assets	$0	OtherChangesInNetAssetsAmt
Info In Schedule O Part XII	Yes (X)	InfoInScheduleOPartXIIInd
Method Of Accounting Accrual	Yes (X)	MethodOfAccountingAccrualInd
Accountant Compile Or Review	0	AccountantCompileOrReviewInd
FS Audited	Yes (1)	FSAuditedInd

FS Audited Basis FSAuditedBasisGrp

Field	Value	IRS element (for citing)
Separate Basis Fincl Stmt	Yes (X)	SeparateBasisFinclStmtInd

Field	Value	IRS element (for citing)
Audit Committee	Yes (1)	AuditCommitteeInd
Federal Grant Audit Required	0	FederalGrantAuditRequiredInd

Schedule A IRS990ScheduleA

Field	Value	IRS element (for citing)
Public Organization170	Yes (X)	PublicOrganization170Ind

Gifts Grants Contri Rcvd170 GiftsGrantsContriRcvd170Grp

Field	Value	IRS element (for citing)
Current Tax Year Minus4 Years	$24,169,773	CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years	$20,991,316	CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years	$21,279,313	CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year	$26,168,507	CurrentTaxYearMinus1YearAmt
Current Tax Year	$19,810,154	CurrentTaxYearAmt
Total	$112,419,063	TotalAmt

Total Calendar Year170 TotalCalendarYear170Grp

Field	Value	IRS element (for citing)
Current Tax Year Minus4 Years	$24,169,773	CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years	$20,991,316	CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years	$21,279,313	CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year	$26,168,507	CurrentTaxYearMinus1YearAmt
Current Tax Year	$19,810,154	CurrentTaxYearAmt
Total	$112,419,063	TotalAmt

Field	Value	IRS element (for citing)
Substantial Contributors Tot	$54,773,639	SubstantialContributorsTotAmt
Public Support Total170	$57,645,424	PublicSupportTotal170Amt

Gross Investment Income170 GrossInvestmentIncome170Grp

Field	Value	IRS element (for citing)
Current Tax Year Minus4 Years	$352,739	CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years	$517,525	CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years	$660,487	CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year	$775,199	CurrentTaxYearMinus1YearAmt
Current Tax Year	$730,271	CurrentTaxYearAmt
Total	$3,036,221	TotalAmt

Unrelated Business Net Incm170 UnrelatedBusinessNetIncm170Grp

Field	Value	IRS element (for citing)
Current Tax Year Minus3 Years	$173,134	CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years	$110,340	CurrentTaxYearMinus2YearsAmt
Current Tax Year	$119,937	CurrentTaxYearAmt
Total	$403,411	TotalAmt

Other Income170 OtherIncome170Grp

Field	Value	IRS element (for citing)
Current Tax Year Minus4 Years	$41,174	CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years	$53,754	CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years	$78,887	CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year	$148,386	CurrentTaxYearMinus1YearAmt
Current Tax Year	$26,071	CurrentTaxYearAmt
Total	$348,272	TotalAmt

Field	Value	IRS element (for citing)
Total Support	$116,206,967	TotalSupportAmt
Public Support CY170	0.49610	PublicSupportCY170Pct
Public Support PY170	0.53080	PublicSupportPY170Pct
Thirty Thr Pct Suprt Tests CY170	Yes (X)	ThirtyThrPctSuprtTestsCY170Ind

Schedule B IRS990ScheduleB

Contributor Information ContributorInformationGrp

Field	Value	IRS element (for citing)
Contributor	RESTRICTED	ContributorNum

Contributor Business Name ContributorBusinessName

Field	Value	IRS element (for citing)
Business Name Line1	RESTRICTED	BusinessNameLine1

Contributor US Address ContributorUSAddress

Field	Value	IRS element (for citing)
Address Line1	RESTRICTED	AddressLine1
Address Line2	RESTRICTED	AddressLine2
City	RESTRICTED	City
State	RESTRICTED	State
ZIP Code	RESTRICTED	ZIPCode

Field	Value	IRS element (for citing)
Total Contributions	RESTRICTED	TotalContributionsAmt

Schedule C IRS990ScheduleC

Field	Value	IRS element (for citing)
Volunteers	Yes (1)	VolunteersInd
Paid Staff Or Management	Yes (1)	PaidStaffOrManagementInd
Media Advertisements	0	MediaAdvertisementsInd
Mailings Members	Yes (1)	MailingsMembersInd
Mailings Members	$24,667	MailingsMembersAmt
Publications Or Broadcast	0	PublicationsOrBroadcastInd
Grants Other Organizations	0	GrantsOtherOrganizationsInd
Direct Contact Legislators	Yes (1)	DirectContactLegislatorsInd
Direct Contact Legislators	$229,595	DirectContactLegislatorsAmt
Rallies Demonstrations	Yes (1)	RalliesDemonstrationsInd
Rallies Demonstrations	$62,876	RalliesDemonstrationsAmt
Other Activities	0	OtherActivitiesInd
Total Lobbying Expenditures	$317,138	TotalLobbyingExpendituresAmt
Not Described Section501c3	0	NotDescribedSection501c3Ind

Supplemental Information Detail SupplementalInformationDetail

Field	Value	IRS element (for citing)
Form And Line Reference	PART II-B, LINE 1:	FormAndLineReferenceDesc
Explanation	THE PUBLIC POLICY DEPARTMENT WORKS TO ESTABLISH AND ADVOCATE FOR POLICIES THAT PROMOTE THE HEALTH, SAFETY, RIGHTS AND ACCESS TO CARE FOR PERSONS WITH BLEEDING DISORDERS BY WORKING WITH FEDERAL AND STATE LAWMAKERS, OTHER GOVERNMENT AGENCIES AND OFFICIALS, THE MEDIA, INDUSTRY AND ALLIED ORGANIZATIONS. TWO KEY INITIATIVES OF THE DEPARTMENT ARE THE NATIONAL ADVOCACY EMPOWERMENT PROGRAM (NAEP) AND WASHINGTON DAYS. THE NAEP PROVIDES TRAINING, TOOLS AND SUPPORT TO ASSIST CONSUMERS IN BECOMING EFFECTIVE ADVOCATES AT THE STATE & FEDERAL LEVELS. WASHINGTON DAYS IS NHF'S ANNUAL GRASSROOTS EVENT WHICH BROUGHT PATIENTS TO DC TO MEET WITH MEMBERS OF CONGRESS.	ExplanationTxt

Schedule D IRS990ScheduleD

CY Endwmt Fund CYEndwmtFundGrp

Field	Value	IRS element (for citing)
Beginning Year Balance	$1,795,609	BeginningYearBalanceAmt
Investment Earnings Or Losses	$203,554	InvestmentEarningsOrLossesAmt
Other Expenditures	$15,392	OtherExpendituresAmt
End Year Balance	$1,983,771	EndYearBalanceAmt

CY Minus1 Yr Endwmt Fund CYMinus1YrEndwmtFundGrp

Field	Value	IRS element (for citing)
Beginning Year Balance	$1,601,942	BeginningYearBalanceAmt
Contributions	$2,426	ContributionsAmt
Investment Earnings Or Losses	$205,715	InvestmentEarningsOrLossesAmt
Other Expenditures	$14,474	OtherExpendituresAmt
End Year Balance	$1,795,609	EndYearBalanceAmt

CY Minus2 Yr Endwmt Fund CYMinus2YrEndwmtFundGrp

Field	Value	IRS element (for citing)
Beginning Year Balance	$1,755,256	BeginningYearBalanceAmt
Contributions	$4,829	ContributionsAmt
Investment Earnings Or Losses	-$144,532	InvestmentEarningsOrLossesAmt
Other Expenditures	$13,611	OtherExpendituresAmt
End Year Balance	$1,601,942	EndYearBalanceAmt

CY Minus3 Yr Endwmt Fund CYMinus3YrEndwmtFundGrp

Field	Value	IRS element (for citing)
Beginning Year Balance	$1,579,434	BeginningYearBalanceAmt
Contributions	$7,208	ContributionsAmt
Investment Earnings Or Losses	$168,614	InvestmentEarningsOrLossesAmt
End Year Balance	$1,755,256	EndYearBalanceAmt

CY Minus4 Yr Endwmt Fund CYMinus4YrEndwmtFundGrp

Field	Value	IRS element (for citing)
Beginning Year Balance	$322,235	BeginningYearBalanceAmt
Contributions	$1,235,537	ContributionsAmt
Investment Earnings Or Losses	$21,662	InvestmentEarningsOrLossesAmt
End Year Balance	$1,579,434	EndYearBalanceAmt

Field	Value	IRS element (for citing)
Prmnnt Endowment Balance EOY	0.75610	PrmnntEndowmentBalanceEOYPct
Term Endowment Balance EOY	0.24390	TermEndowmentBalanceEOYPct
Endowments Held Unrelated Org	0	EndowmentsHeldUnrelatedOrgInd
Endowments Held Related Org	0	EndowmentsHeldRelatedOrgInd

Leasehold Improvements LeaseholdImprovementsGrp

Field	Value	IRS element (for citing)
Other Cost Or Other Basis	$51,576	OtherCostOrOtherBasisAmt
Depreciation	$28,377	DepreciationAmt
Book Value	$23,199	BookValueAmt

Equipment EquipmentGrp

Field	Value	IRS element (for citing)
Other Cost Or Other Basis	$472,738	OtherCostOrOtherBasisAmt
Depreciation	$279,262	DepreciationAmt
Book Value	$193,476	BookValueAmt

Field	Value	IRS element (for citing)
Total Book Value Land Buildings	$216,675	TotalBookValueLandBuildingsAmt

Other Securities OtherSecuritiesGrp (4 entries)

DescDesc	Book ValueBookValueAmt	Method ValuationMethodValuationCd
MUTUAL FUNDS-FIXED INCOME	$9,136,198	F
MUTUAL FUNDS-EQUITY-U.S. MUTUAL	$8,365,632	F
FUNDS-EQUITY-INTERNATIONAL	$5,595,706	F
COMMON AND PREFERRED STOCK US LARGE CAP EQUITY	$673	F

Field	Value	IRS element (for citing)
Total Book Value Securities	$23,098,209	TotalBookValueSecuritiesAmt

Other Liabilities Org OtherLiabilitiesOrgGrp (3 entries)

DescDesc	AmtAmt
DEFERRED RENT	$368,806
DEFERRED PENSION LIABILITY	$676,256
PAYCHECK PROTECTION PROGRAM LOAN	$1,398,100

Field	Value	IRS element (for citing)
Total Liability	$2,443,162	TotalLiabilityAmt
Footnote Text	Yes (X)	FootnoteTextInd
Total Rev Etc Audited Fincl Stmt	$23,848,901	TotalRevEtcAuditedFinclStmtAmt
Net Unrealized Gains Invst	$1,623,308	NetUnrealizedGainsInvstAmt
Other Revenue	$775,681	OtherRevenueAmt
Revenue Not Reported	$2,398,989	RevenueNotReportedAmt
Revenue Subtotal	$21,449,912	RevenueSubtotalAmt
Investment Expenses Not Incld	$35,292	InvestmentExpensesNotIncldAmt
Revenue Not Reported Fincl Stmt	$35,292	RevenueNotReportedFinclStmtAmt
Total Revenue Per Form990	$21,485,204	TotalRevenuePerForm990Amt
Tot Expns Etc Audited Fincl Stmt	$19,778,074	TotExpnsEtcAuditedFinclStmtAmt
Other Expenses Included	$775,681	OtherExpensesIncludedAmt
Expenses Not Reported	$775,681	ExpensesNotReportedAmt
Expenses Subtotal	$19,002,393	ExpensesSubtotalAmt
Investment Expenses Not Incld2	$35,292	InvestmentExpensesNotIncld2Amt
Expenses Not Rpt Fincl Stmt	$35,292	ExpensesNotRptFinclStmtAmt
Total Expenses Per Form990	$19,037,685	TotalExpensesPerForm990Amt

Supplemental Information Detail SupplementalInformationDetail (4 entries)

Form And Line ReferenceFormAndLineReferenceDesc	ExplanationExplanationTxt
PART V, LINE 4:	TO PROVIDE FUNDING FOR RESEARCH FELLOWSHIP GRANTS. THE FOUNDATION HAS DECIDED TO APPROPRIATE FUNDS ON AN ANNUAL BASIS FOR EXPENDITURE AT THE RATE UP TO 4% OF THE FUND'S AVERAGE FAIR MARKET VALUE OVER THE MOST RECENT 36-MONTH PERIOD TAKING INTO CONSIDERATION RELEVANT ECONOMIC, INVESTMENT, AND FINANCIAL CONDITIONS. NET AMOUNTS AVAILABLE FOR RELEASE ACCUMULATED FROM PREVIOUS YEARS TOTAL $483,771 AND $295,609 AS OF DECEMBER 31, 2020 AND 2019, RESPECTIVELY, AND ARE RECORDED AS DONOR RESTRICTED NET ASSETS UNTIL DESIGNATED AS RESEARCH AWARDS.
PART X, LINE 2:	THE FOUNDATION RECOGNIZES THE EFFECT OF INCOME TAX POSITIONS ONLY IF THOSE POSITIONS ARE MORE LIKELY THAN NOT OF BEING SUSTAINED. MANAGEMENT HAS DETERMINED THAT THE FOUNDATION HAD NO UNCERTAIN TAX POSITIONS THAT WOULD REQUIRE FINANCIAL STATEMENT RECOGNITION OR DISCLOSURE. THE ORGANIZATION IS NO LONGER SUBJECT TO EXAMINATIONS BY THE APPLICABLE TAXING JURISDICTIONS FOR TAX YEARS PRIOR TO 2017.
PART XI, LINE 2D - OTHER ADJUSTMENTS:	SPECIAL EVENTS EXPENSE NETTED AGAINST REVENUE 775,681.
PART XII, LINE 2D - OTHER ADJUSTMENTS:	SPECIAL EVENTS EXPENSE NETTED AGAINST REVENUE 775,681.

Schedule F IRS990ScheduleF

Field	Value	IRS element (for citing)
Grant Records Maintained	Yes (1)	GrantRecordsMaintainedInd
Subtotal Offices	0	SubtotalOfficesCnt
Subtotal Employees	0	SubtotalEmployeesCnt
Continuation Total Office	0	ContinuationTotalOfficeCnt
Continuation Total Employee	0	ContinuationTotalEmployeeCnt
Total Office	0	TotalOfficeCnt
Total Employee	0	TotalEmployeeCnt
Subtotal Spent	$0	SubtotalSpentAmt
Continuation Spent	$0	ContinuationSpentAmt
Total Spent	$0	TotalSpentAmt

Grants To Org Outside US GrantsToOrgOutsideUSGrp

Field	Value	IRS element (for citing)
Region	CENTRAL AMERICA	RegionTxt
Purpose Of Grant	SUPPORT ACTIVITIES FOR PATIENTS WITH BLEEDING DISORDERS	PurposeOfGrantTxt
Cash Grant	$20,000	CashGrantAmt
Manner Of Cash Disbursement	CHECK	MannerOfCashDisbursementTxt
Non Cash Assistance	$0	NonCashAssistanceAmt

Field	Value	IRS element (for citing)
Total501c3 Org	1	Total501c3OrgCnt
Transfer To Foreign Corp	Yes (1)	TransferToForeignCorpInd
Interest In Foreign Trust	0	InterestInForeignTrustInd
Foreign Corp Ownership	0	ForeignCorpOwnershipInd
Passive Foreign Investmest Co	0	PassiveForeignInvestmestCoInd
Foreign Partnership	0	ForeignPartnershipInd
Boycott Countries	0	BoycottCountriesInd

Supplemental Information Detail SupplementalInformationDetail (2 entries)

Form And Line ReferenceFormAndLineReferenceDesc	ExplanationExplanationTxt
PART I, LINE 2:	COMMITMENT TO WFH (WORLD FEDERATION OF HEMOPHILIA) TO PROVIDE FUNDING TO WFH'S COALITION OF AMERICAS PROGRAM.
PART III ACCOUNTING METHOD:

Schedule G IRS990ScheduleG

Fundraising Event Information FundraisingEventInformationGrp

Field	Value	IRS element (for citing)
Event1	WALKS	Event1Nm
Gross Receipts Event1	$1,059,029	GrossReceiptsEvent1Amt
Charitable Contri Event1	$1,059,029	CharitableContriEvent1Amt
Rent Facility Costs Event1	$32,138	RentFacilityCostsEvent1Amt
Food And Beverage Event1	$1,002	FoodAndBeverageEvent1Amt
Other Direct Expenses Event1	$503,314	OtherDirectExpensesEvent1Amt
Event2	SPRING SOIREE	Event2Nm
Gross Receipts Event2	$298,684	GrossReceiptsEvent2Amt
Charitable Contri Event2	$298,684	CharitableContriEvent2Amt
Rent Facility Costs Event2	$3,805	RentFacilityCostsEvent2Amt
Other Direct Expenses Event2	$140,900	OtherDirectExpensesEvent2Amt
Other Events Total	9	OtherEventsTotalCnt
Gross Receipts Other Events	$253,892	GrossReceiptsOtherEventsAmt
Charitable Contri Other Events	$250,332	CharitableContriOtherEventsAmt
Gross Revenue Other Events	$3,560	GrossRevenueOtherEventsAmt
Rent Fclty Costs Other Events	$374	RentFcltyCostsOtherEventsAmt
Food And Beverage Other Events	$1,226	FoodAndBeverageOtherEventsAmt
Oth Direct Expnss Other Events	$92,922	OthDirectExpnssOtherEventsAmt
Gross Receipts Total	$1,611,605	GrossReceiptsTotalAmt
Charitable Contributions Tot	$1,608,045	CharitableContributionsTotAmt
Gross Revenue Total Events	$3,560	GrossRevenueTotalEventsAmt
Rent Fclty Costs Total Events	$36,317	RentFcltyCostsTotalEventsAmt
Food And Beverage Total Events	$2,228	FoodAndBeverageTotalEventsAmt
Oth Direct Expnss Total Events	$737,136	OthDirectExpnssTotalEventsAmt
Direct Expense Summary Events	$775,681	DirectExpenseSummaryEventsAmt
Net Income Summary	-$772,121	NetIncomeSummaryAmt

Schedule I IRS990ScheduleI

Field	Value	IRS element (for citing)
Grant Records Maintained	Yes (1)	GrantRecordsMaintainedInd

Recipient Table RecipientTable (66 entries)

Address Line1USAddress/AddressLine1Txt	CityUSAddress/CityNm	State AbbreviationUSAddress/StateAbbreviationCd	ZIPUSAddress/ZIPCd	Recipient EINRecipientEIN	IRC SectionIRCSectionDesc	Cash GrantCashGrantAmt	Purpose Of GrantPurposeOfGrantTxt	Address Line2USAddress/AddressLine2Txt
THE UNIVERSITY OF N CAROLINA AT CHAPEL HILL
PO BOX 402420	ATLANTA	GA	30384	566001393	501 ( C) ( 3)	$304,000	1 CLINICAL RESEARCH FELLOWSHIPS AND 1 JGP RESEARCH FELLOWSHIP PROMOTING INNOVATION IN BLEEDING AND CLOTTING DISORDERS
BLEEDING DISORDERS ALLIANCE OF NDAKOTA
PO BOX 548	FARGO	ND	58107	471684681	501 ( C) ( 3)	$10,275	COVID-19 RELIEF GRANT & UNITE WALK GRANTS
MARY M GOOLEY HEMOPHILIA CTR
1415 PORTLAND AVE STE 500	ROCHESTER	NY	14621	160836536	501 ( C) ( 3)	$7,500	COVID-19 RELIEF GRANT
THE MEDICAL COLLEGE OF WISCONSIN
8701 WATERTOWN PLANK ROAD	MILWAUKEE	WI	53226	390806261	501 ( C) ( 3)	$210,000	CLINICAL RESEARCH FELLOWSHIP PROMOTING INNOVATION IN BLEEDING AND CLOTTING DISORDERS
UNIVERSITY OF TEXAS HEALTH CENTER AT SA
7703 FLOYD CURL DR	SAN ANTONIO	TX	78229	943425643	501 ( C) ( 3)	$208,000	2 JGP RESEARCH FELLOWSHIPS PROMOTING INNOVATION IN BLEEDING AND CLOTTING DISORDERS
UNIVERSITY OF MICHIGAN
3003 SOUTH STATE ROOM 1054	ANN ARBOR	MI	48109	522414582	501 ( C) ( 3)	$191,000	CLINICAL RESEARCH FELLOWSHIP PROMOTING INNOVATION IN BLEEDING AND CLOTTING DISORDERS
ASOCIACION PUERTORRIQUENA DE HEMOFILIA
PO BOX 29005	SAN JUAN	PR	00929	660559280	501 ( C) ( 3)	$15,000	COVID-19 RELIEF GRANT & CHAPTER CAPACITY BUILDING GRANT
HEMOPHILIA TREATMENT CENTER - ULP
2401 TERRA CROSSING BLVD SUITE 202	LOUISVILLE	KY	40245	273645560	501 ( C) ( 3)	$15,000	NURSING FELLOWSHIP AWARDS
TEXAS CENTRAL HEMOPHILIA ASSN
12700 HILLCREST ROAD STE 191	DALLAS	TX	75230	751187148	501 ( C) ( 3)	$14,500	STATE BASED ADVOCACY COALITION GRANT & COVID-19 RELIEF GRANT
HEMOPHILIA OF NORTH CAROLINA
260 TOWN HALL DRIVE STE A	MORRISVILLE	NC	27560	561273974	501 ( C) ( 3)	$12,500	STATE BASED ADVOCACY COALITION GRANT & COVID-19 RELIEF GRANT
HEMOPHILIA FDN OF GREATER FLORIDA
1350 NORANGE AVE STE 227	WINTER PARK	FL	32789	593418827	501 ( C) ( 3)	$12,500	STATE BASED ADVOCACY COALITION GRANT & COVID-19 RELIEF GRANT
HEMOPHILIA COUNCIL OF CALIFORNIA
1507 21ST STREET STE 103	SACRAMENTO	CA	95811	680182998	501 ( C) ( 3)	$12,000	STATE BASED ADVOCACY COALITION GRANT
HEMOPHILIA OF IOWA
1570 SOUTH 1ST AVENUE J	IOWA CITY	IA	52240	421334948	501 ( C) ( 3)	$11,500	COVID-19 RELIEF GRANT & NHF DISASTER AND EMERGENCY RELIEF PROGRAM
BOSTON CHILDREN'S HOSPITAL
300 LONGWOOD AVENUE	BOSTON	MA	02115	042774441	501 ( C) ( 3)	$10,500	JGP RESEARCH FELLOWSHIP PROMOTING INNOVATION IN BLEEDING AND CLOTTING DISORDERS
UNIVERSITY OF COLORADO DENVER
13199 EAST MONTVIEW BLVD	AURORA	CO	80045	840404231	501 ( C) ( 3)	$10,500	JGP RESEARCH FELLOWSHIP PROMOTING INNOVATION IN BLEEDING AND CLOTTING DISORDERS
LOUISIANA HEMOPHILIA FOUNDATION
3636 S SHERWOOD FOREST BLVD 390	BATON ROUGE	LA	70816	510207472	501 ( C) ( 3)	$7,500	COVID-19 RELIEF GRANT
THE HEMOPHILIA CENTER OF WESTERN PENNSYLVANIA
20411 RT 19 UNIT 14	CRANBERRY TOWNSHIP	PA	16066	251359331	501 ( C) ( 3)	$10,000	SOCIAL WORKER FELLOWSHIP
OKLAHOMA HEMOPHILIA FOUNDATION
8283 N OWASSO EXPY SUITE H	OWASSO	OK	74055	730745621	501 ( C) ( 3)	$14,500	STATE BASED ADVOCACY COALITION GRANT & COVID-19 RELIEF GRANT
BLEEDING DISORDERS ASSN OF NE NEW YORK
333 BROADWAY STE 320	TROY	NY	12180	222519156	501 ( C) ( 3)	$9,500	COVID-19 RELIEF GRANT & UNITE WALK GRANTS
HEMOPHILIA ASSOC OF SAN DIEGO COUNTY
3550 CAMINO DEL RIO NORTH SUITE 105	SAN DIEGO	CA	92108	237252243	501 ( C) ( 3)	$9,500	COVID-19 RELIEF GRANT & UNITE WALK GRANTS	105
HEMOPHILIA FOUNDATION OF SCALIFORNIA
959 E WALNUT STREET 114	PASADENA	CA	91106	951916053	501 ( C) ( 3)	$9,500	COVID-19 RELIEF GRANT & UNITE WALK GRANTS
KENTUCKY HEMOPHILIA FOUNDATION
1850 TAYLOR AVENUE SUITE 2	LOUISVILLE	KY	40213	610656750	501 ( C) ( 3)	$9,500	COVID-19 RELIEF GRANT & UNITE WALK GRANTS
LONE STAR CHAPTER OF NHF
5600 NORTHWEST CENTRAL DR STE140	HOUSTON	TX	77092	760661966	501 ( C) ( 3)	$9,500	COVID-19 RELIEF GRANT & UNITE WALK GRANTS
MIDWEST HEMOPHILIA ASSOCIATION
1471 W SOUTH STREET SUITE F	OZARK	MO	65721	431595395	501 ( C) ( 3)	$9,500	COVID-19 RELIEF GRANT & UNITE WALK GRANTS
NORTHWEST OHIO HEMOPHILIA FDN
2121 HUGHES DRIVE HARRIS MACINTOSH	TOLEDO	OH	43606	340965673	501 ( C) ( 3)	$9,500	COVID-19 RELIEF GRANT & UNITE WALK GRANTS	TOWER SUITE 940
ROCKY MTN HEMOPHILIA & BLEEDING DISORDERS
1627 W MAIN ST 142	BOZEMAN	MT	59715	810533720	501 ( C) ( 3)	$9,500	COVID-19 RELIEF GRANT & UNITE WALK GRANTS
SANGRE DE ORO INC
4600 LINCOLN RD NE SUITE 22	ALBERQUERQUE	NM	87109	850378433	501 ( C) ( 3)	$9,500	COVID-19 RELIEF GRANT & UNITE WALK GRANTS
WESTERN PA CHAPTER OF NHF
20411 ROUTE 19 UNIT 14	CRANBERRY TOWNSHIP	PA	16066	251359331	501 ( C) ( 3)	$9,500	COVID-19 RELIEF GRANT & UNITE WALK GRANTS
BLEEDING DISORDER FDN OF WASHINGTON
9639 FIRDALE AVE STE A	EDMONDS	WA	98020	916068857	501 ( C) ( 3)	$7,500	COVID-19 RELIEF GRANT
HEMOPHILIA ASSOCIATION OF NEW JERSEY
197 ROUTE 18 SOUTH SUITE 206	EAST BRUNSWICK	NJ	08816	221964188	501 ( C) ( 3)	$7,500	COVID-19 RELIEF GRANT
HEMOPHILIA ASSOCIATION OF NEW YORK INC
131 WEST 33RD STREET SUITE11D	NEW YORK	NY	10001	135650955	501 ( C) ( 3)	$7,500	COVID-19 RELIEF GRANT
AMERICAN THROMBOSIS HEMOSTATIS NETWORK
67 RED ROCK CIRCLE	ROCHESTER	NY	14626	205244339	501 ( C) ( 3)	$249,700	NHF INVESTIGATOR INITIATED RESEARCH IN DEVELOPING OF POINT-OF-CARE TESTING FOR HEMOPHILIA AND MLOF RNA EXTRACTION OF GENOTYPING SAMPLES, STORAGE, PROCESSING AND MAINTENANCE OF THESE SAMPLES
SNAKE RIVER HEMOPHILIA AND BDA INC
520 CHURCH STREET PO BOX 245	NEWDALE	ID	83436	201822216	501 ( C) ( 3)	$7,500	COVID-19 RELIEF GRANT
SOUTHWEST OHIO HEMOPHILIA FOUNDATION
3131 SOUTH DIXIE DRIVE SUITE 103	MORAINE	OH	45439	311527065	501 ( C) ( 3)	$7,500	COVID-19 RELIEF GRANT
UNITED HEMOPHILIA FOUNDATION
12138 CENTRAL AVENUE SUITE 872	MITCHELLVILLE	MD	20721	813826935	501 ( C) ( 3)	$7,500	COVID-19 RELIEF GRANT
NEW YORK CITY HEMOPHILIA CHAPTER
315 WEST 36TH STREET 2ND FLOOR	NEW YORK	NY	10018	261915425	501 ( C) ( 3)	$13,250	STATE BASED ADVOCACY COALITION GRANT & COVID-19 RELIEF GRANT
UTAH HEMOPHILIA FOUNDATION
772 EAST 3300 SOUTH SUITE 210	SALT LAKE CITY	UT	84106	876127162	501 ( C) ( 3)	$7,500	COVID-19 RELIEF GRANT
INDIANA HEMOPHILIA & THROMBOSIS CENTER
8326 NAAB RD	INDIANAPOLIS	IN	46260	352047838	501 ( C) ( 3)	$100,000	GRANT TO ENHANCE BLEEDING DISORDERS EDUCATION
REGENTS OF THE UNIVERSITY OF CALIFORNIA
1156 HIGH ST	SANTA CRUZ	CA	95064	941539563	501 ( C) ( 3)	$60,000	NHF INNOVATIVE INVESTIGATOR RESEARCH AWARD
VIRGINIA HEMOPHILIA FOUNDATION
410 N RIDGE ROAD SUITE 215	RICHMOND	VA	23229	541183181	501 ( C) ( 3)	$24,500	STATE BASED ADVOCACY COALITION GRANT & COVID-19 RELIEF GRANT
HEMOPHILIA OF SOUTH CAROLINA
439 CONGAREE ROAD SUITE BOX 5	GREENVILLE	SC	29607	237400632	501 ( C) ( 3)	$22,500	STATE BASED ADVOCACY COALITION GRANT & COVID-19 RELIEF GRANT
HEMOPHILIA FOUNDATION OF MICHIGAN
1921 W MICHIGAN AVE	YPSILANTI	MI	48197	381905673	501 ( C) ( 3)	$20,000	STATE BASED ADVOCACY COALITION GRANT & COVID-19 RELIEF GRANT
ALASKA HEMOPHILIA ASSOCIATION
1601 W NRTHRN LTS BLVD	ANCHORAGE	AK	99517	943143226	501 ( C) ( 3)	$19,500	COVID-19 RELIEF GRANT & NHF DISASTER AND EMERGENCY RELIEF GRANT
TRI-STATE BLEEDING DISORDER FDN
635 W 7TH ST	CINCINNATI	OH	45203	310928221	501 ( C) ( 3)	$19,500	COVID-19 RELIEF GRANT & NHF DISASTER AND EMERGENCY RELIEF GRANT
BLEEDING DISORDERS ALLIANCE ILLINOIS
210 SOUTH DESPLAINES	CHICAGO	IL	60661	362390156	501 ( C) ( 3)	$17,000	STATE BASED ADVOCACY COALITION GRANT & COVID-19 RELIEF GRANT
PACIFIC NORTHWEST BLEEDING DISORDERS
456 SW MONROE AVE	CORVALLIS	OR	97333	480780314	501 ( C) ( 3)	$16,500	STATE BASED ADVOCACY COALITION GRANT & COVID-19 RELIEF GRANT
NEW ENGLAND HEMOPHILIA ASSOCIATION
347 WASHINGTON STREETSTE402	DEDHAM	MA	02026	046111861	501 ( C) ( 3)	$16,000	STATE BASED ADVOCACY COALITION GRANT & COVID-19 RELIEF GRANT
GREAT LAKES HEMOPHILIA FOUNDATION
638 N 18TH ST STE 108	MILWAUKEE	WI	53233	237367636	501 ( C) ( 3)	$15,500	STATE BASED ADVOCACY COALITION GRANT & COVID-19 RELIEF GRANT
RADY CHILDREN'S HOSPITAL - SAN DIEGO
3020 CHILDRENS WAY	SAN DIEGO	CA	92123	951691313	501 ( C) ( 3)	$15,000	PHYSICAL THERAPIST FELLOWSHIP
OHSU DOERNBECHER CHILDREN'S HOSPITAL
1121 SOUTHWEST SALMON SUITE 100	PORTLAND	OR	97205	930579589	501 ( C) ( 3)	$10,000	PHYSICAL THERAPIST FELLOWSHIP
EASTERN PENNSYLVANIA CHAPTER OF NHF
1489 BALTIMORE PIKE STE 227	SPRINGFIELD	PA	19064	231567876	501 ( C) ( 3)	$12,500	STATE BASED ADVOCACY COALITION GRANT & COVID-19 RELIEF GRANT
EMORY UNIVERSITY
PO BOX 935084	ATLANTA	GA	31193	580566256	501 ( C) ( 3)	$213,152	CLINICAL RESEARCH FELLOWSHIP PROMOTING INNOVATION IN BLEEDING AND CLOTTING DISORDERS
CENTRAL CALIFORNIA HEMOPHILIA FDN
PO BOX 163689	SACRAMENTO	CA	95816	680182998	501 ( C) ( 3)	$9,500	STATE BASED ADVOCACY COALITION GRANT & COVID-19 RELIEF GRANT
FLORIDA HEMOPHILIA ASSOCIATION
915 MIDDLE RIVER DR STE 421	FORT LAUDERDALE	FL	33304	592072352	501 ( C) ( 3)	$9,500	STATE BASED ADVOCACY COALITION GRANT & COVID-19 RELIEF GRANT
GATEWAY HEMOPHILIA ASSOCIATION
4976 EICHELBERGER	SAINT LOUIS	MO	63109	431447057	501 ( C) ( 3)	$9,500	STATE BASED ADVOCACY COALITION GRANT & COVID-19 RELIEF GRANT
HEMOPHILIA ALLIANCE OF MAINE
PO BOX 794	AUGUSTA	ME	04332	275057729	501 ( C) ( 3)	$9,500	STATE BASED ADVOCACY COALITION GRANT & COVID-19 RELIEF GRANT
HEMOPHILIA ASSOC OF SAN DIEGO COUNTY
3550 CAMINO DEL RIO NORTH SUITE 105	SAN DIEGO	CA	92108	237252243	501 ( C) ( 3)	$9,500	STATE BASED ADVOCACY COALITION GRANT & COVID-19 RELIEF GRANT	105
HEMOPHILIA OF INDIANA
6910 N SHADELAND AVE STE 140	INDIANAPOLIS	IN	46220	351278222	501 ( C) ( 3)	$9,500	STATE BASED ADVOCACY COALITION GRANT & COVID-19 RELIEF GRANT
ARIZONA HEMOPHILIA ASSOCIATION
826 N 5TH AVENUE	PHOENIX	AZ	85003	860209257	501 ( C) ( 3)	$7,500	COVID-19 RELIEF GRANT
CONNECTICUT HEMOPHILIA SOCIETY
PO BOX 548	WINDSOR	CT	06095	271752178	501 ( C) ( 3)	$7,500	COVID-19 RELIEF GRANT
HCWNY FOUNDATION INC
1010 MAIN S	BUFFALO	NY	14202	464703683	501 ( C) ( 3)	$7,500	COVID-19 RELIEF GRANT
HEMOPHILIA ASSN OF THE CAPITAL AREA
8136 OLD KEENE MILL ROAD SUITE A312	SPRINGFIELD	VA	22152	541702561	501 ( C) ( 3)	$7,500	COVID-19 RELIEF GRANT	A312
HEMOPHILIA FOUNDATION OF MARYLAND
13 CLASS COURT	PARKVILLE	MD	21234	521973777	501 ( C) ( 3)	$7,500	COVID-19 RELIEF GRANT
HEMOPHILIA FOUNDATION OF MNDAKOTAS
750 S PLAZA DR 207	MENDOTA HEIGHTS	MN	55120	416032276	501 ( C) ( 3)	$7,500	COVID-19 RELIEF GRANT
TENNESSEE HEMOPHILIA & BLEEDING DISORDERS
1819 WARD DRIVE SUITE 102	MURFREESBORO	TN	37129	621662856	501 ( C) ( 3)	$7,500	COVID-19 RELIEF GRANT
SISTERS AND CAREGIVERS BLEEDING DISORDERS
5626 FEATHERCREEK RD	MATTESON	IL	60443	472777844	501 ( C) ( 3)	$7,500	COVID-19 RELIEF GRANT

Field	Value	IRS element (for citing)
Total501c3 Org	66	Total501c3OrgCnt

Grants Other Asst To Indiv In US GrantsOtherAsstToIndivInUSGrp (2 entries)

Grant TypeGrantTypeTxt	RecipientRecipientCnt	Cash GrantCashGrantAmt
CHAPTERS EMERGENCY FINANCIAL ASSISTANCE TO FAMILIES WITH BLEEDING DISORDERS	167	$118,719
SCHOLARSHIP AWARDS	2	$3,850

Supplemental Information Detail SupplementalInformationDetail

Field	Value	IRS element (for citing)
Form And Line Reference	PART I, LINE 2:	FormAndLineReferenceDesc
Explanation	BASED ON THE NHF REQUIREMENTS, ALL CHAPTERS THAT WERE AWARDED GRANTS PROVIDE QUARTERLY PROGRAM AND FINANCIAL REPORTS REGARDING THEIR GRANTS WITH NHF. ONLY AFTER SUBMISSION OF A QUARTERLY PROGRAM REPORT DESCRIBING THEIR PROGRESS IN COMPLETING DELINEATED TASKS AND COMPLETE FINANCIAL REPORTING NHF WILL RELEASE THE NEXT QUARTERLY PAYMENT FOR THE GRANT RECIPIENTS. THE FINAL PAYMENT IS HELD UNTIL A FULL FINAL SUMMARY REPORT IS HANDED IN, ALL TASKS HAVE BEEN ADDRESSED AND FINANCIAL STATEMENTS RECONCILED (GRANTS TO CHAPTERS). ALL GRANTEES FOR THE RESEARCH PROGRAMS MUST SUBMIT FINANCIAL REPORTS FROM THEIR INSTITUTION STATING THE PAYMENTS HAVE BEEN RECEIVED AND APPROPRIATE EXPENSES INCURRED. DEPENDING UPON THE AWARD, THESE REPORTS ARE EITHER DUE ON A SEMI-ANNUAL OR ANNUAL BASIS. SUBSEQUENT PAYMENTS AND DECISIONS REGARDING CONTINUATION OF MULTI-YEAR GRANTS ARE DEPENDENT UPON ANNUAL RECEIPT, REVIEW AND APPROVAL OF BUDGETS, FINANCIAL REPORTS, CONTINUATION APPLICATIONS AND SCIENTIFIC PROGRESS REPORTS. AS A CONDITION OF THEIR AWARD, ALL GRANTEES SIGN AN AGREEMENT WITH NHF TO ABIDE BY OUR ORGANIZATION'S GRANT POLICIES AND PROCEDURES, WHICH ALSO INCLUDES A DESCRIPTION OF AUTHORIZED AND UNAUTHORIZED EXPENSES.	ExplanationTxt

Schedule J IRS990ScheduleJ

Field	Value	IRS element (for citing)
Compensation Committee	Yes (X)	CompensationCommitteeInd
Independent Consultant	Yes (X)	IndependentConsultantInd
Written Employment Contract	Yes (X)	WrittenEmploymentContractInd
Compensation Survey	Yes (X)	CompensationSurveyInd
Board Or Committee Approval	Yes (X)	BoardOrCommitteeApprovalInd
Severance Payment	Yes (1)	SeverancePaymentInd
Supplemental Nonqual Rtr Plan	0	SupplementalNonqualRtrPlanInd
Equity Based Comp Arrngm	0	EquityBasedCompArrngmInd
Comp Based On Revenue Of Flng Org	0	CompBasedOnRevenueOfFlngOrgInd
Comp Bsd On Rev Related Orgs	0	CompBsdOnRevRelatedOrgsInd
Comp Bsd Net Earns Flng Org	0	CompBsdNetEarnsFlngOrgInd
Comp Bsd Net Earns Rltd Orgs	0	CompBsdNetEarnsRltdOrgsInd
Any Non Fixed Payments	Yes (1)	AnyNonFixedPaymentsInd
Initial Contract Exception	0	InitialContractExceptionInd

Rltd Org Officer Trst Key Empl RltdOrgOfficerTrstKeyEmplGrp (10 entries)

TitleTitleTxt	Base Compensation Filing OrgBaseCompensationFilingOrgAmt	Compensation Based On Rltd OrgsCompensationBasedOnRltdOrgsAmt	Bonus Filing OrganizationBonusFilingOrganizationAmount	Bonus Related OrganizationsBonusRelatedOrganizationsAmt	Other Compensation Filing OrgOtherCompensationFilingOrgAmt	Other Compensation Rltd OrgsOtherCompensationRltdOrgsAmt	Deferred Compensation Flng OrgDeferredCompensationFlngOrgAmt	Deferred Comp Rltd OrgsDeferredCompRltdOrgsAmt	Nontaxable Benefits Filing OrgNontaxableBenefitsFilingOrgAmt	Nontaxable Benefits Rltd OrgsNontaxableBenefitsRltdOrgsAmt	Total Compensation Filing OrgTotalCompensationFilingOrgAmt	Total Compensation Rltd OrgsTotalCompensationRltdOrgsAmt	Comp Report Prior990 Filing OrgCompReportPrior990FilingOrgAmt	Comp Report Prior990 Rltd OrgsCompReportPrior990RltdOrgsAmt
VAL BIAS
FORMER CHIEF EXECUTIVE OFFICER	$0	$0	$0	$0	$373,362	$0	$0	$0	$38,097	$0	$411,459	$0	$0	$0
JORDANA ZEGER
CHIEF FISCAL OFFICER	$275,622	$0	$500	$0	$3,200	$0	$23,428	$0	$12,627	$0	$315,377	$0	$0	$0
LEONARD VALENTINO
PRESIDENT & CHIEF EXECUTIVE OFFICER	$268,370	$0	$0	$0	$2,346	$0	$0	$0	$10,633	$0	$281,349	$0	$0	$0
MICHELLE RICE
CHIEF EXTERNAL AFFAIRS OFFICER	$190,249	$0	$1,000	$0	$966	$0	$27,531	$0	$26,512	$0	$246,258	$0	$0	$0
SANDRA D ROTELLINI
CHIEF OPERATING OFFICER	$198,985	$0	$1,000	$0	$1,806	$0	$28,262	$0	$12,840	$0	$242,893	$0	$0	$0
BRETT SPITALE
V.P. OF ADVANCEMENT	$176,579	$0	$1,000	$0	$630	$0	$18,713	$0	$36,475	$0	$233,397	$0	$0	$0
MICHELLE WITKOP
HEAD OF RESEARCH	$176,230	$0	$1,000	$0	$1,188	$0	$11,977	$0	$25,793	$0	$216,188	$0	$0	$0
NEIL FRICK
S.V.P. OF RESEARCH & MEDICAL INFORMA	$169,306	$0	$1,000	$0	$966	$0	$24,086	$0	$12,840	$0	$208,198	$0	$0	$0
TIMOTHY BRENT
SENIOR DIRECTOR OF BUSINESS DEVELOPM	$153,173	$0	$3,000	$0	$414	$0	$9,255	$0	$36,475	$0	$202,317	$0	$0	$0
ANNA SPROVSKAYA
CONTROLLER	$155,137	$0	$1,000	$0	$4,164	$0	$22,402	$0	$12,841	$0	$195,544	$0	$0	$0

Supplemental Information Detail SupplementalInformationDetail (3 entries)

Form And Line ReferenceFormAndLineReferenceDesc	ExplanationExplanationTxt
PART I, LINE 3	THE BOARD OF DIRECTORS SETS THE COMPENSATION OF THE CEO AT HIRE AND THEREAFTER USES AN INDEPENDENT CONSULTANT'S ANALYSIS OF COMPARABLE SALARY SURVEYS (BIENNIAL).
PART I, LINE 4A	VAL BIAS RECEIVED A SEVERANCE PACKAGE OF $411,459 DURING 2020.
PART I, LINE 7	THE CEO SHALL BE ELIGIBLE TO RECEIVE AN ANNUAL BONUS OF UP TO 10% OF BASE SALARY BASED ON PERFORMANCE IN A CONTRACT YEAR. THE FORM AND AMOUNT OF ANY PERFORMANCE BONUS SHALL BE WITHIN THE BOARD'S DISCRETION. THE BONUS DETERMINATION WILL BE MADE PURSUANT TO A FORMALIZED REVIEW PROCESS CONDUCTED BY THE BOARD OF DIRECTORS.

Schedule O IRS990ScheduleO

Supplemental Information Detail SupplementalInformationDetail (8 entries)

Form And Line ReferenceFormAndLineReferenceDesc	ExplanationExplanationTxt
FORM 990, PART VI, SECTION A, LINE 6	THE ORGANIZATION HAS CHAPTER MEMBERS WHO ARE VOTING MEMBERS OF THE ORGANIZATION. AN ORGANIZATION WHOSE MISSION AND PURPOSE IS CONSISTENT WITH THE MISSION OF NHF MAY APPLY TO BE A CHAPTER MEMBER. THE ORGANIZATION MUST MEET CERTAIN STANDARDS IN ORDER TO BE APPROVED AS A CHAPTER. THE CEO IS AUTHORIZED TO ACCEPT OR DENY CHAPTER MEMBER STATUS.
FORM 990, PART VI, SECTION A, LINE 7A	CHAPTER MEMBERS ARE ENTITLED TO VOTE FOR DIRECTORS FOR EACH OF THE VACANCIES TO BE FILLED DURING ELECTIONS.
FORM 990, PART VI, SECTION B, LINE 11B	A COPY OF FORM 990 IS CIRCULATED ELECTRONICALLY TO THE ORGANIZATION'S BOARD MEMBERS. THE FULL BOARD WILL HAVE THE OPPORTUNITY TO HAVE THE FORM 990 PRESENTED TO THEM BY THE AUDITOR BY CONFERENCE CALL PRIOR TO BEING SUBMITTED. THE CEO, CBO, COO AND CONTROLLER ARE ALSO PRESENT ON THE CALL.
FORM 990, PART VI, SECTION B, LINE 12C	ALL EMPLOYEES, OFFICERS AND DIRECTORS MUST COMPLETE A CONFLICT OF INTEREST FORM STATING THAT THEY HAVE NO CONFLICT OF INTEREST OR IF THEY DO, THEY MUST DISCLOSE SUCH CONFLICT ON THIS FORM. THIS FORM MUST BE COMPLETED AT THE TIME OF HIRE AND EVERY YEAR THEREAFTER. FOR MATTERS CONCERNING CONFLICTS OF INTEREST BY A VOTING MEMBER OF THE BOARD, THE MEMBER WILL BE PROHIBITED FROM PARTICIPATING IN DELIBERATIONS AND DECISIONS CONCERNING ITEMS THAT GIVE RISE TO SUCH CONFLICTS. IN THE EVENT A CONFLICT OF INTEREST IS DISCLOSED, THE MATTER WILL BE REVIEWED BY THE CEO, CBO AND COO. THE CEO, CBO AND COO MAY DECIDE TO PERMIT EXCEPTIONS TO THIS POLICY IF IT IS DETERMINED, IN GOOD FAITH, THAT SUCH PROPOSED CONTRACT OR TRANSACTION IS ON TERMS WHICH ARE MATERIALLY ADVANTAGEOUS TO NHF OR THE EMPLOYEE INVOLVED WILL PROVIDE A UNIQUE SERVICE TO NHF ON TERMS WHICH ARE FAIR AND REASONABLE TO NHF.
FORM 990, PART VI, SECTION B, LINE 15	THE BOARD OF DIRECTORS SETS THE COMPENSATION OF CEO AT HIRE AND THEREAFTER USES AN INDEPENDENT CONSULTANT'S ANALYSIS OF COMPARABLE SALARY SURVEYS (BIANNUALLY). THE CEO SETS COMPENSATION FOR KEY EMPLOYEES WITHIN A DESIGNATED SALARY RANGE IN ALIGNMENT WITH A STRUCTURE THAT INCORPORATES A COMPREHENSIVE SALARY ANALYSIS PROVIDED BY A COMPENSATION CONSULTING COMPANY AS WELL AS INPUT FROM COO/HR. THIS WAS LAST UNDERTAKEN IN 2020.
FORM 990, PART VI, SECTION C, LINE 19	THE ORGANIZATION MAKES ITS FORM 990, FINANCIAL STATEMENTS, ARTICLES OF INCORPORATION, CONFLICTS OF INTEREST, FORM 1023, AND BY-LAWS AVAILABLE ON THE ORGANIZATION'S WEBSITE AT WWW.HEMOPHILIA.ORG OR UPON WRITTEN REQUEST OR BY CALLING THE ORGANIZATION DIRECTLY.
FORM 990, PART IX, LINE 11G	EMPLOYMENT RECRUITING: PROGRAM SERVICE EXPENSES 891. MANAGEMENT AND GENERAL EXPENSES 8,040. FUNDRAISING EXPENSES 0. TOTAL EXPENSES 8,931. CONSULTING: PROGRAM SERVICE EXPENSES 1,500,446. MANAGEMENT AND GENERAL EXPENSES 303,132. FUNDRAISING EXPENSES 10,316. TOTAL EXPENSES 1,813,894. TEMPORARY HELP: PROGRAM SERVICE EXPENSES 166. MANAGEMENT AND GENERAL EXPENSES 30. FUNDRAISING EXPENSES 5. TOTAL EXPENSES 201. OTHER PROFESSIONAL FEES: PROGRAM SERVICE EXPENSES 1,194,142. MANAGEMENT AND GENERAL EXPENSES 213,126. FUNDRAISING EXPENSES 0. TOTAL EXPENSES 1,407,268. PAYROLL PROCESSING FEES: PROGRAM SERVICE EXPENSES 10,887. MANAGEMENT AND GENERAL EXPENSES 7,729. FUNDRAISING EXPENSES 5,731. TOTAL EXPENSES 24,347.
FORM 990, PART XII, LINE 2C:	THE ORGANIZATION HAS A COMMITTEE THAT ASSUMES RESPONSIBILITY FOR OVERSIGHT OF THE AUDIT OF ITS FINANCIAL STATEMENTS. FOR FISCAL YEAR 2020, THE ORGANIZATION CHANGED ITS SELECTION OF AN INDEPENDENT ACCOUNTANT.