2016-08-12T13:14:22-05:00 2015-12-31 221732349 WISS & COMPANY LLP 354 EISENHOWER PARKWAY LIVINGSTON NJ 07039 990 2015-01-01 135641857 NATIONAL HEMOPHILIA FOUNDATION NATI 2123283700 7 PENN PLAZA SUITE 1204 NEW YORK NY 10001 VAL BIAS CHIEF EXECUTIVE OFFICER 2123283700 2016-08-11 1 MICHAEL ANDRIOLA P00252682 9739949400 2015 2016-12-15 16:53:06Z VAL BIAS 7 PENN PLAZA SUITE 1204 NEW YORK NY 10001 31279555 0 X WWW.HEMOPHILIA.ORG X 1948 NY DEDICATED TO FINDING BETTER TREATMENTS AND CURES FOR INHERITABLE BLEEDING DISORDES AND TO PREVENTING THE COMPLICATIONS OF THESE DISORDERS THROUGH EDUCATION, ADVOCACY AND RESEARCH. 16 16 84 1050 1679135 300824 15252599 19114046 2052483 2100521 484700 343358 -940068 -1130271 16849714 20427654 1384553 1582355 0 0 6087678 6250396 24300 22645 1070830 7928120 10427142 15424651 18282538 1425063 2145116 19647371 22146226 7043701 7887628 12603670 14258598 X THE NATIONAL HEMOPHILIA FOUNDATION IS DEDICATED TO FINDING BETTER TREATMENTS AND CURES FOR INHERITABLE BLEEDING DISORDERS AND TO PREVENTING THE COMPLICATIONS OF THESE DISORDERS THROUGH EDUCATION, ADVOCACY AND RESEARCH. 0 0 7603626 119771 421386 HEALTH EDUCATION AND TRAINING - THROUGH HANDI, NHF'S INFORMATION RESOURCE CENTER, MORE THAN 2,000 REQUESTS WERE ANSWERED IN 2015. THESE REQUESTS WERE RECEIVED FROM PATIENTS, FAMILIES, HEALTHCARE PROVIDERS AND THE GENERAL PUBLIC ON SUCH TOPICS AS HEMOPHILIA, VON WILLEBRAND DISEASE, HEALTHCARE COVERAGE, HEPATITIS C, HIV, INHIBITOR FORMATION AND SCHOOL ISSUES. IN COLLABORATION WITH MEDSCAPE EDUCATION, NHF OFFERED 11 EDUCATIONAL PROGRAMS FOR HEALTHCARE PROVIDERS REACHING OVER 101,000 LEARNERS. NHF PROVIDED LIVE HEALTHCARE PROVIDER EDUCATION TO 450 INDIVIDUALS AT NHF'S 2015 ANNUAL MEETING AS WELL AS PROVIDING A SEPARATE SYMPOSIUM "ONE IN A MILLION: MANAGING RARE BLEEDING DISORDERS" FOR 110 NURSES. NHF PROVIDED FUNDING AND CREATED EDUCATIONAL CONTENT FOR THE LARGEST GATHERING OF FACTOR XIII DEFICIENT PATIENTS AND THEIR FAMILIES TO ATTEND NHF'S 2015 ANNUAL MEETING WITH A TOTAL OF 27 ATTENDEES. NHF DEVELOPED 4 PSYCHOSOCIAL EDUCATIONAL MODULES THAT WERE OFFERED TO NHF CHAPTERS AND HEMOPHILIA TREATMENT CENTERS FOR USE AT THEIR LIVE MEETINGS THROUGH OUR COLLABORATING IN CARE PROGRAM. 21 CHAPTERS ACROSS THE UNITED STATES TOOK ADVANTAGE OF THIS RESOURCE WITH A TOTAL OF 786 ATTENDEES. NHF ALSO DEVELOPED AND WROTE 61 NEWS STORIES ON UPDATES IN HEMATOLOGY BOTH SCIENTIFIC AND INDUSTRY PRODUCED THAT WERE POSTED ON THE NHF WEB SITE.NHF ORGANIZED 2 NATIONAL INHIBITOR EDUCATION SUMMITS IN ENGLISH FOR PATIENTS AND FAMILIES EXPERIENCING THE COMPLICATION OF AN INHIBITOR. THE FIRST WAS JULY 9-12, 2015, IN WESTMINSTER, CO, WITH 397 TOTAL PARTICIPANTS. THE SECOND WAS JULY 16-19, 2015, IN ATLANTA, GA, WITH 456 TOTAL PARTICIPANTS. NHF SUCCESSFULLY OFFERED FOUR REGIONAL INHIBITOR EDUCATION SUMMITS IN GREENVILLE, SC WITH 67 ATTENDEES, MINNEAPOLIS, MN WITH 71 ATTENDEES, SAN DIEGO, CA WITH 55 ATTENDEES AND SAN ANTONIO, TX WITH 72 ATTENDEES. NHF ALSO PRODUCED 4 WEBINARS SPECIFICALLY FOR INHIBITOR PATIENTS ON PSYCHOSOCIAL ISSUES THAT ARE NOW AVAILABLE FOR VIEWING ON NHF'S WEB SITE. THE PRIMARY GOALS OF THE NATIONAL HEMOPHILIA FOUNDATION'S (NHF'S) VICTORY FOR WOMEN PROGRAM ARE: 1) TO INCREASE AWARENESS TO FACILITATE EARLY AND ACCURATE DIAGNOSES; AND 2) TO PROVIDE AFFECTED WOMEN WITH EDUCATION AND SUPPORT. 2015 HIGHLIGHTS INCLUDED: A WEBINAR SERIES WITH KEY LEADERS AND GUEST SPEAKERS THAT TEACHES CHAPTERS HOW TO CREATE A WOMEN'S EDUCATIONAL SUPPORT PROGRAM AND HOW TO EVALUATE SUCCESS; THIS PROGRAM INCLUDED FUNDS TO CHAPTERS FOR EDUCATIONAL AND SUPPORT ACTIVITIES FOR GIRLS AND WOMEN WITH BLEEDING DISORDERS; FUNDING FOR CHAPTERS TO SEND A WOMAN WITH A BLEEDING DISORDER TO THE NHF ANNUAL MEETING; PROVIDED SEVEN EDUCATIONAL SESSIONS FOR FEMALE CONSUMERS AT THE NHF 2015 ANNUAL MEETING; AND PROVIDED WORKSHOPS (TOPICS INCLUDE: FROM MY STRUGGLE COMES MY STRENGTH, WORK-LIFE BALANCE AND ADVOCATING FOR YOURSELF AS A WOMAN) FOR CONSUMERS AT CHAPTER EDUCATION DAYS AND WOMEN'S RETREATS. NHF DISTRIBUTED OVER 3000 EDUCATIONAL PRINT MATERIALS TARGETING WOMEN OR THOSE WITH VON WILLEBRAND DISEASE.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 2015, STEPSFORLIVING.HEMOPHILIA.ORG HAD 99,000 USERS AND NEW VIDEOS, LIKE MAKING YOUR CLOTTING FACTOR WORK FOR YOU AND BLEEDING DISORDERS IN THE WORKPLACE: WHAT EMPLOYEES SHOULD KNOW ABOUT RIGHTS AND ACCOMMODATIONS. NHF PROVIDED 2 IN-PERSON STEPS FOR LIVING TRAIN THE TRAINER PROGRAMS FOR STAFF AND HEALTHCARE PROVIDERS FROM 33 CHAPTERS/HTCS ACROSS THE COUNTRY AND FACILITATED WORKSHOPS FOR CONSUMERS AT 17 LOCAL CHAPTER EVENTS. NHF CONTINUED TO PRINT AND DISTRIBUTE OVER 2700 EDUCATIONAL PRINT MATERIALS INCLUDING GUIDELINES FOR GROWING BROCHURE SERIES, A WELCOME KIT FOR NEWLY DIAGNOSED FAMILIES, AND MY HTC AND ME COLORING BOOKS IN ENGLISH AND SPANISH.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 2015, NHF PROVIDED TRAININGS TO THE 21 MEMBERS OF NYLI ON TOPICS INCLUDING PUBLIC SPEAKING, ADVOCACY, NON-PROFIT MANAGEMENT AND FUNDRAISING. NINE NYLI MEMBERS ASSUMED LEADERSHIP POSITIONS IN A VARIETY OF NHF PROGRAMS, INCLUDING SERVING AS A NON-VOTING MEMBER OF THE NHF BOARD; NHF ANNUAL MEETING PLANNING COMMITTEE; CDC CONTENT ADVISORY GROUPS FOR JOINT HEALTH AND WOMEN WITH BLEEDING DISORDERS; 1ST-YEAR NYLI LEADERSHIP TRAINING; WASHINGTON DAYS AND NHF ANNUAL MEETING NYLI TRAINING COMMITTEE; ANNUAL MEETING TEEN TRACK; HEMAWARE MAGAZINE EDITORIAL GROUP; AND SOCIAL MEDIA REPRESENTATIVE. NYLI MEMBERS PROVIDED EDUCATIONAL SESSIONS, ADVOCATED ON BEHALF THEIR STATES IN WASHINGTON DC, LED PEER EDUCATION PROGRAMS FOR TEENS, AND FACILITATED RAP SESSIONS AT NATIONAL MEETINGS. NHF IMPLEMENTED ITS NEW 3-YEAR STRUCTURE, WHICH PLACES STRONG EMPHASIS ON TRAINING IN HOW TO DELIVER IN-PERSON PROGRAMMING FOR LOCAL CHAPTERS AND HTCS. AREAS OF FOCUS ARE OUTREACH, ADVOCACY, AND NON-PROFIT DEVELOPMENT. 3914357 239762 COMMUNITY SERVICES - NHF'S PUBLIC POLICY DEPARTMENT WORKS TO ESTABLISH AND ADVOCATE FOR POLICIES THAT PROMOTE THE HEALTH, SAFETY, RIGHTS AND ACCESS TO CARE FOR PEOPLE WITH BLEEDING DISORDERS BY EDUCATING FEDERAL AND STATE LAWMAKERS, OTHER GOVERNMENT AGENCIES AND OFFICIALS , 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. CONSUMERS ARE ENCOURAGED TO PARTICIPATE IN NHF'S ANNUAL WASHINGTON DAYS PROGRAM, WHICH IS A GRASSROOTS EVENT THAT BRINGS PATIENTS AND THEIR FAMILIES TO THE HILL TO MEET WITH THEIR MEMBERS OF CONGRESS. IN ADDITION, NHF PROVIDES A SERIES OF EDUCATIONAL OPPORTUNITIES FOR PAYERS TO HELP THEM BETTER UNDERSTAND THE UNIQUE HEALTHCARE NEEDS OF THOSE AFFECTED BY BLEEDING DISORDERS. 1811044 391359 CHAPTER SERVICES - NHF'S CHAPTER SERVICES DEPARTMENT PROVIDES COMMUNITY SUPPORT BY HELPING ITS 51 MEMBER CHAPTERS OFFER EDUCATION, RESOURCES AND REFERRALS TO AFFECTED MEMBERS OF THE BLEEDING DISORDERS COMMUNITY IN THE 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 MENTOR CHAPTER LEADERS ON HOW TO CREATE, EXECUTE AND EVALUATE EDUCATIONAL PROGRAMS DESIGNED FOR THEIR AFFECTED CONSTITUENTS. IN 2015 CHAPTER SERVICES HELD TWO REGIONAL LEADERSHIP SEMINARS OFFERING TRAINING ON ETHICAL ISSUES FOR NONPROFITS, HEALTHCARE FOR CHAPTERS, FUNDRAISING, ADVOCACY AND EDUCATIONAL INITIATIVES. A FULL "CHAPTER TRAINING TRACK" WAS ALSO OFFERED DURING NHF'S 2015 ANNUAL MEETING IN DALLAS, TX. 1307692 831463 RESEARCH - NHF AWARDED TWO (2) NHF/BAXTALTA CLINICAL FELLOWSHIPS TO FELLOWS AT BOSTON CHILDREN'S HOSPITAL AND THE UNIVERSITY OF MICHIGAN. TWO (2) NHF JUDITH GRAHAM POOL POSTDOCTORAL RESEARCH FELLOWSHIPS WERE AWARDED AT THE FOLLOWING INSTITUTIONS: THE UNIVERSITY OF COLORADO AT DENVER FOR THE PROJECT "A MULTI-SYSTEM EVALUATION OF VWF FUNCTION IN TYPE 1 VWD MUTATIONS AND DUKE UNIVERSITY FOR THE PROJECT "UNDERSTANDING THE LOSS OF PERIVASCULAR TISSUE FACTOR DURING ANGIOGENESIS IN HEMOPHILIA." THE NHF NURSING EXCELLENCE FELLOWSHIP WAS AWARDED TO A NURSE AT THE UNIVERSITY OF CALIFORNIA IN SAN FRANCISCO FOR HER PROJECT, "THE USE OF HIGH RESOLUTION POWER DOPPLER MUSCULOSKELETAL ULTRASOUND IN BLEEDING DISORDERS." THE NHF SOCIAL WORK EXCELLENCE FELLOWSHIP WAS AWARDED TO A SOCIAL WORKER AT THE HENRY FORD HEALTH SYSTEMS FOR HER PROJECT, "THE ROLE OF THE HEMOPHILIA TREATMENT CENTER SOCIAL WORKER: A NATIONAL SURVEY." THE NHF PHYSICAL THERAPY EXCELLENCE FELLOWSHIP TO A PHYSICAL THERAPIST AT THE OREGON HEALTH & SCIENCE UNIVERSITY FOR HIS PROJECT, "EFFECT OF EXERCISE ON BONE MINERAL DENSITY AND STRENGTH IN FACTOR VIII DEFICIENT MICE." 1307692 831463 14636719 1 1 0 1 0 0 0 0 0 1 1 1 0 0 1 1 1 0 0 0 0 1 0 1 1 0 0 1 1 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 153 0 1 84 1 1 1 0 0 0 0 1 1 0 0 0 0 X 16 16 0 0 0 0 1 1 0 1 1 0 1 1 1 1 1 1 1 1 1 1 0 AL AK AR CA CO CT KS FL GA HI IL KY ME MD MA MI MN MS MO NH NJ NM NY NC ND OH OK RI SC TN VA WA WV WI UT PA OR X X JORDANA ZEGER 2123283700 7 PENN PLAZA SUITE 1204 NEW YORK NY 10001 JORGE DE LA RIVA CHAIR 10.00 X X 0 0 0 CAROL SIMONETTI VICE-CHAIR 10.00 X X 0 0 0 BRIAN ANDREW TREASURER 10.00 X X 0 0 0 MARK BORRELIZ SECRETARY 10.00 X X 0 0 0 JEFF ALEXIS MD DIRECTOR 10.00 X 0 0 0 JORDAN BLACK DIRECTOR 10.00 X 0 0 0 DAVID COHENOUR DIRECTOR 10.00 X 0 0 0 BARBARA GORDON DIRECTOR 10.00 X 0 0 0 JAMES F HAMMEL MD DIRECTOR 10.00 X 0 0 0 KRISTIE KAY OSTASH MD DIRECTOR 10.00 X 0 0 0 JAMES A HEER DIRECTOR 10.00 X 0 0 0 MATT RHODES DIRECTOR 10.00 X 0 0 0 DUTTA SATADIP DIRECTOR 10.00 X 0 0 0 GILBERT C WHITE II MD DIRECTOR 10.00 X 0 0 0 LYNN WILMARTH DIRECTOR 10.00 X 0 0 0 MARTIN SCOTT DIRECTOR 10.00 X 0 0 0 KENNETH TRADER TO 22015 DIRECTOR 10.00 X 0 0 0 VAL BIAS CHIEF EXECUTIVE OFFICER 40.00 X 321504 0 82875 JORDANA ZEGER CHIEF OPERATING OFFICER 40.00 X 213150 0 49399 JOSEPH KLEIBER SENIOR V.P. OF CHAPTER SER 40.00 X 195705 0 41476 MARY ANN LUDWIG V.P. OF DEVELOPMENT 40.00 X 232896 0 34078 NEIL FRICK V.P. OF RESEARCH & MEDICAL 40.00 X 139293 0 25717 JOHN INDENCE V.P. OF MARKETING AND COMM 40.00 X 141034 0 25665 SANDRA ROTELLINI V.P. OF CHAPTER DEVELOPMEN 40.00 X 136422 0 24699 MICHELLE RICE V.P. OF PUBLIC POLICY & ST 40.00 X 131733 0 44933 1511737 0 328842 11 0 1 0 IMPACT EDUCATION LLC 589 SKIPPACK PIKE SUITE 200 BLUE BELL PA 19422 CONTINUING EDUCATION 862334 MANIFEST LLC 4110 N SCOTTSDALE ROAD SUITE 315 SCOTTSDALE AZ 85251 PRODUCTION OF HEMAWARE 565527 INTEGRATED PUBLISHING SALES LLC 519 SPICEBUSH LANE CHARGIN FALLS OH 44023 SALES OF ADVERTISING SPACE 248280 SCHERER CLINICAL COMMUNICATIONS 117 WEST PROSPECT STREET HOPEWELL NJ 08525 EDUCATIONAL PROGRAMMING SVC 232030 CAVAROCCHI RUSCIO DENNIS ASSOCIATES L 600 MARYLAND AVE SW STE 835W WASHINGTON DC 20024 CONSULTANT FOR STRATEGIC SERVICES AND PU 204000 13 17479 2232686 401996 16461885 8132 19114046 ADVERTISING 541800 1679135 1679135 EDUCATIONAL SEMINARS 611710 413846 413846 PUBLICATIONS 900099 7540 7540 2100521 364496 364496 9628359 9649497 -21138 -21138 -21138 37210 2232686 1202404 -1165194 -1165194 34923 34923 34923 20427654 421386 1679135 -786913 X 1460469 1460469 71886 71886 50000 50000 904109 606618 202098 95393 4066795 2606166 1047036 413593 231006 177289 20322 33395 672815 556608 49758 66449 375671 310786 27783 37102 33546 13929 19452 165 56017 56017 207808 207808 22645 22645 29140 29140 2931030 2568001 349617 13412 159759 106012 36115 17632 595182 395075 159821 40286 3923814 3805850 83442 34522 38065 34022 4043 40110 40010 100 UNRELATED BUS. INC. TAX 128808 128808 STATIONERY AND PRINTING 1009893 709163 135197 165533 EQUIPMENT RENTAL 815631 654552 141193 19886 POSTAGE AND SHIPPING 192718 106195 5378 81145 265621 101504 138588 25529 18282538 14636719 2574989 1070830 8259231 9507956 1069393 258192 925301 1008760 132877 382321 343592 41866 54637 301726 8713245 10225338 492687 461933 19647371 22146226 1766481 1724918 5101322 5744565 175898 418145 7043701 7887628 X 9118296 11094190 3235374 2914408 250000 250000 12603670 14258598 19647371 22146226 X 2145116 -521160 30972 X X 0 1 X 1 0 X 9705585 12859589 14116476 15252599 19114046 71048295 9705585 12859589 14116476 15252599 19114046 71048295 43858948 27189347 157760 151910 157447 205115 364496 1036728 147971 86234 40297 130207 301824 706533 343205 8792 24861 34923 411781 73203337 3014594 0.37140 0.37790 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 1 1 0 1 21384 0 0 1 242593 1 24314 0 288291 0 PART II-B, LINE 1: 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. WASHINGTON DAYS IS NHF'S ANNUAL GRASSROOTS EVENT WHICH BROUGHT PATIENTS TO WASHINGTON D.C. TO MEET WITH MEMBERS OF CONGRESS. 328061 -5826 322235 314811 13250 328061 287878 26933 314811 271335 16543 287878 268750 2585 271335 0.77580 0.22420 0 0 51576 3521 48055 267820 28222 239598 24196 10123 14073 301726 MUTUAL FUNDS-FIXED INCOME 4208458 F MUTUAL FUNDS-EQUITY-U.S. 3671693 F MUTUAL FUNDS-EQUITY-INTERNATIONAL 2345187 F 10225338 DEFERRED RENT 229457 457B PLAN PAYABLE 188688 418145 X 19937466 -521160 30972 -490188 20427654 0 20427654 18282538 0 18282538 0 18282538 PART V, LINE 4: TO PROVIDE FUNDING FOR RESEARCH FELLOWSHIP GRANTS. THE FOUNDATION TEMPORARILY RESTRICTED $5,826 IN 2015 REPRESENTS LOSS FROM THE ENDOWMENT FUND. TEMPORARILY RESTRICTED ASSETS OF $72,235 REPRESENTS INCOME ACCUMULATION FROM INCEPTION - JULY 1, 2008 TO DECEMBER 31, 2015. PART X, LINE 2: THE FOUNDATION IS EXEMPT FROM FEDERAL INCOME TAXES UNDER SECTION 501 (C)(3) OF THE INTERNAL REVENUE CODE AND HAS MADE NO PROVISION FOR FEDERAL OR STATE INCOME TAXES IN THE ACCOMPANYING FINANCIAL STATEMENTS. IN ADDITION, THE FOUNDATION HAS BEEN DETERMINED BY THE INTERNAL REVENUE SERVICE (IRS) NOT TO BE A "PRIVATE FOUNDATION" WITHIN THE MEANING OF SECTION 509(A) OF THE INTERNAL REVENUE CODE. OTHER SIGNIFICANT TAX POSITIONS INCLUDE ITS DETERMINATION OF WHETHER ANY AMOUNTS ARE SUBJECT TO UNRELATED BUSINESS INCOME TAX (UBIT). THE FOUNDATION HAS ACTIVITIES SUBJECT TO UBIT IN THE YEARS ENDED 2015 AND 2014 AND HAS FILED FORM 990T. ALL SIGNIFICANT TAX POSITIONS HAVE BEEN CONSIDERED BY MANAGEMENT AND IT HAS BEEN DETERMINED THAT ALL TAX POSITIONS WOULD BE SUSTAINED UPON EXAMINATION BY TAXING AUTHORITIES. THE FOUNDATION IS REQUIRED TO FILE FORM 990 (RETURN OF ORGANIZATION EXEMPT FROM INCOME TAX) AND THE CHAR500 (ANNUAL FILING FOR CHARITABLE ORGANIZATIONS), WHICH ARE SUBJECT TO EXAMINATION BY THE IRS UP TO THREE YEARS FROM THE EXTENDED DUE DATE OF THE TAX RETURN. THE FORMS 990 AND CHAR500 FOR 2012 THROUGH 2014 ARE OPEN TO EXAMINATION BY THE IRS AS OF DECEMBER 31, 2015. UNRELATED BUSINESS INCOME TAX FOR THE YEARS ENDED DECEMBER 31, 2015 AND 2014 AMOUNTED TO $128,808 AND $51,937, RESPECTIVELY, AND IS INCLUDED UNDER PRINTING AND OTHER (PRODUCTION OF THE HEMAWARE MAGAZINE, BOTH PRINTED AND ONLINE FORMATS) IN THE STATEMENTS OF FUNCTIONAL EXPENSES. PART XI, LINE 2D - OTHER ADJUSTMENTS: ADJUSTMENT FOR PRIOR YEAR RECOVERY 30,972. 0 0 0 0 0 0 0 0 0 0 NORTH AMERICA DONATION TO "CLOSE THE GAP CAMPAIGN" TO MAKE POSITIVE STRIDES FOR SUSTAINABLE CARE AND TREATMENT FOR ALL, INTERNATIONALLY. 50000 CHECK 0 0 0 0 0 0 X X X X X 1 JOSEPH TUMULO - GIFT PLANNING DEVEL 100 CHESTNUT PLACE NEW HARTFORD NY 13413 STRATEGIC PLANNING & DEV., TRAINING ON GIFT GIVING 0 0 2500 0 MATTHEW HUGG - HUGGDOTNET LLC 807 EAST HANCOCK STREET LANSDALE PA 19446 INTERVIEWED DONORS & WROTE DONOR NEWLETTERS 0 0 10245 0 ANTHONY BUFFONE - STRATEGIC IDENTIT 2112 PARKDALE AVENUE GLENSIDE PA 19038 CONSULTANT/ NAT'L HEMOPHILIA WALK PROGRAM 0 0 9900 0 22645 WALK-A-THON 1664502 1664502 30000 11338 122012 42313 2600 630096 SOIREE 391657 378465 13192 7925 19070 43486 2500 138300 9 213737 189719 24018 2145 22396 2536 7650 118037 2269896 2232686 37210 30000 21408 163478 88335 12750 886433 1202404 -1165194 1 ALASKA HEMOPHILIA ASSOCIATION 3851 PIPER AVENUE SUITE U-239 ANCHORAGE AK 99508 943143226 501(C)(3) 11250 STAFFING GRANT-TO SUPPORT THE LOCAL BLEEDING DISORDER COMMUNITY AND TO MEET METRICS ESTABLISHED WITHIN NHF'S ACT INITIATIVE. BLEEDING DISORDER ASSN OF NE NEW YORK PO BOX 947 172B COLUMBIA TURNPIKE RENSSELAER NY 12144 222519156 501(C)(3) 32500 ADVOCACY CAPACITY BUILDING; VICTORY FOR WOMEN GRANT-WEBINAR SERIES PROG., AND STAFFING ASSISTANCE FOR CHAPTER. BOSTON CHILDREN'S HOSPITAL 300 LONGWOOD AVENUE BOSTON MA 02115 042774441 501(C)(3) 203667 1 JGP AND 2 CLINICAL RESEARCH FELLOWSHIPS PROMOTING INNOVATION IN BLEEDING AND CLOTTING DISORDERS CHILDREN'S HOSPITAL OF PHILADELPHIA 3501 CIVIC CENTER BOULEVARD PHILADELPHIA PA 19104 231352166 501(C)(3) 100000 CLINICAL RESEARCH FELLOWSHIP PROMOTING INNOVATION IN BLEEDING AND CLOTTING DISORDERS CHILDREN'S NATIONAL MEDICAL CENTER 111 MICHIGAN AVE WASHINGTON DC 20010 521640403 501(C)(3) 22500 HTC CAPACITY BUILDING GRANT DUKE UNIVERSITY PO BOX 602651 CHARLOTTE NC 282622651 560532129 501(C)(3) 21000 POSTDOCTORAL RESEARCH FELLOWSHIP AWARD JGP HEMOPHILIA ALLIANCE OF MAINE 1014 WESTERN AVENUE HAMPDEN ME 04444 275057729 501(C)(3) 17500 STAFFING GRANT- TO SUPPORT THE LOCAL BLEEDING DISORDER COMMUNITY AND TO MEET METRICS ESTABLISHED WITHIN NHF'S ACT INITIATIVE. HEMOPHILIA ASSN OF THE CAPITAL AREA 10560 MAIN ST SUITE 419 FAIRFAX VA 22030 541702561 501(C)(3) 5625 STAFFING GRANT- TO SUPPORT THE LOCAL BLEEDING DISORDER COMMUNITY AND TO MEET METRICS ESTABLISHED WITHIN NHF'S ACT INITIATIVE. HEMOPHILIA COUNCIL OF CALIFORNIA 1507 21ST STREET STE 103 SACRAMENTO CA 95811 680182998 501(C)(3) 33750 ADVOCACY CAPACITY BUILDING GRANT HEMOPHILIA CENTER AT OREGON HEALTH & SCIENCE 707 SW GAINES STREET PORTLAND OR 97239 237083114 501(C)(3) 10000 HTC CAPACITY BUILDING GRANT-FUNDING PSYCHOLOGY FELLOWSHIPS AND SURVEYS HEMOPHILIA FOUNDATION OF GREATER FLORIDA 1350 NORANGE AVE SUITE 227 WINTER PARK FL 32789 593418827 501(C)(3) 10000 STAFFING GRANT- TO SUPPORT THE LOCAL BLEEDING DISORDER COMMUNITY AND TO MEET METRICS ESTABLISHED WITHIN NHF'S ACT INITIATIVE. HEMOPHILIA FOUNDATION OF MICHIGAN 1921 W MICHIGAN AVE YPSILANTI MI 48197 381905673 501(C)(3) 70625 STAFFING GRANT- TO SUPPORT THE LOCAL BLEEDING DISORDER COMMUNITY AND TO MEET METRICS ESTABLISHED WITHIN NHF'S ACT INITIATIVE. HEMOPHILIA FOUNDATION OF N CALIFORNIA 6400 HOLLIS ST SUITE 6 EMERYVILLE CA 94608 941638703 501(C)(3) 10000 STAFFING GRANT- TO SUPPORT THE LOCAL BLEEDING DISORDER COMMUNITY AND TO MEET METRICS ESTABLISHED WITHIN NHF'S ACT INITIATIVE. HEMOPHILIA FOUNDATION OF OREGON 10940 SW BARNES RD 129 PORTLAND OR 97225 930551733 501(C)(3) 5045 STAFFING ASSISTANCE FOR CHAPTER HEMOPHILIA TREATMENT CENTER OF NEVADA 3121 SOUTH MARYLAND PARKWAY SUITE 206 LAS VEGAS NV 89109 260286469 501(C)(3) 10000 HTC CAPACITY BUILDING GRANT HENRY FORD HEALTH SYSTEMS ONE FORD PLACE - 5F DETROIT MI 48202 381357020 501(C)(3) 10000 SOCIAL WORKERS' EXCELLENCE FELLOWSHIP KAPIOLANI HEALTH FOUNDATION 1319 PUNAHOU ST HONOLULU HI 96826 990246364 501(C)(3) 11775 HTC CAPACITY BUILDING GRANT FOR PATIENT OUTREACH TO REMOTE AREAS LONE STAR CHAPTER OF NHF 5600 NORTHWEST CENTRAL RD SUITE 140 140 HOUSTON TX 77092 760661966 501(C)(3) 6250 CHAPTER CAPACITY BUILDING TO DEVELOP EDUCATIONAL WEBSITE AND TO MEET METRICS ESTABLISHED WITHIN NHF'S ACT INITIATIVE. LUCILE PACKARD CHILDREN'S HOSP STANFORD 1000 WELCH RD SUITE 300 PALO ALTO CA 94304 770440090 501(C)(3) 6417 HTC CAPACITY BUILDING GRANT FOR EDUCATING SCHOOL PERSONNEL AND EMPHASIZING IMPORTANCE OF PHYSICAL ACTIVITY FOR STUDENTS WITH BLEEDING DISORDERS N DAKOTA HEMOSTASIS THROMBOSIS TREATMENT CENTER 520 MAIN STREET SUITE 700 FARGO ND 58102 450398104 501(C)(3) 31786 SURVEY OF PATIENT KNOWLEDGE AND ATTITUDES; COORDINATE CARE WITH EDUCATORS, SCHOOL NURSES, DENTISTS, ETC. NORTWEST OHIO HEMOPHILIA FOUNDATION 2121 HUGHES DRIVE HARRIS MACINTOSH TOWER SUITE 940 TOLEDO OH 43606 340965673 501(C)(3) 20000 ADVOCACY CAPACITY BUILDING PORTLAND VA RESEARCH FOUNDATION PO BOX 69539 PORTLAND OR 97239 943090170 501(C)(3) 10000 PHYSICAL THERAPY EXCELLENCE FELLOWSHIP REGENTS OF THE UNIVERSITY OF MICHIGAN 3003 S STATE ST 1ST FL WOLVERINE TOWER ANN ARBOR MI 48109 386006309 501(C)(3) 102000 CLINICAL RESEARCH FELLOWSHIP PROMOTING INNOVATION IN BLEEDING AND CLOTTING DISORDERS ROCKY MTN HEMOPHILIA & BLEEDING DISORDERS 167 W MAIN ST SUITE 142 BOZEMAN MT 59715 810533720 501(C)(3) 9500 ADVOCACY AND CHAPTER CAPACITY BUILDING GRANT FOR OUTREACH TO RURAL AREAS SERVED SANGRE DE ORO INC PO BOX 51494 ABUQUERQUE NM 87181 850378433 501(C)(3) 32525 STAFFING ASSISTANCE FOR CHAPTER ST LUKE'S HEMOPHILIA CENTER 100E IDAHO STREET BOISE ID 83712 820161600 501(C)(3) 60000 HTC CAPACITY BUILDING GRANT TEXAS CENTRAL HEMOPHILIA ASSOCIATION 12700 HILLCREST ROAD STE 191 DALLAS TX 75230 751187148 501(C)(3) 40000 ADVOCACY AND CHAPTER CAPACITY BUILDING GRANTS THE CHILDREN'S HOSPITAL OF PHILADELPHIA 3501 CIVIC CENTER BOULEVARD PHILADEPHIA PA 19104 231352166 501(C)(3) 63000 CLINICAL RESEARCH FELLOWSHIP PROMOTING INNOVATION IN BLEEDING AND CLOTTING DISORDERS THE REGENTS OF THE UNIVERSITY OF CALIFORNIA 1855 FOLSOM ST STE 425 SAN FRANCISCO CA 141430812 946036493 501(C)(3) 13500 NURSING EXCELLENCE FELLOWSHIP AWARD FOR MEDICAL RESEARCH ADMINISTRATORS OF THE TULANE EDUCATIONAL FUND 6823 ST CHARLES AVENUE NEW ORLEANS LA 70118 720423889 501(C)(3) 102945 CLINICAL RESEARCH FELLOWSHIP PROMOTING INNOVATION IN BLEEDING AND CLOTTING DISORDERS UNIVERSITY OF N CAROLINA AT CHAPEL HILL PO BOX 402420 ATLANTA GA 303842420 566001393 501(C)(3) 81500 CLINICAL RESEARCH FELLOWSHIP PROMOTING INNOVATION IN BLEEDING AND CLOTTING DISORDERS UNIVERSITY OF CALIFORNIA SAN DIEGO 9500 GILMAN DRIVE LA JOLLA CA 92093 956006144 501(C)(3) 70000 CLINICAL RESEARCH FELLOWSHIP PROMOTING INNOVATION IN BLEEDING AND CLOTTING DISORDERS UNIVERSITY OF COLORADO DENVER 13199 EAST MONTVIEW BLVD AURORA CO 80045 840404231 501(C)(3) 66000 CLINICAL RESEARCH FELLOWSHIP PROMOTING INNOVATION IN BLEEDING AND CLOTTING DISORDERS VANDERBILT UNIVERSITY MEDICAL CENTER PO BOX 121236 DALLAS TX 75312 620476822 501(C)(3) 19730 HTC CAPACITY BUILDING GRANT FOR WOMEN WITH BLEEDING DISORDERS VIRGINIA COMMONWEALTH UNIVERSITY PO BOX 980461 RICHMOND VA 23298 546001758 501(C)(3) 20953 HTC CAPACITY BUILDING GRANT FOR GENETIC COUNSELING VIRGINIA HEMOPHILIA FOUNDATION PO BOX 188 MIDLOTHIAN VA 23113 541183181 501(C)(3) 14000 CHAPTER CAPACITY BUILDING GRANT- TO SUPPORT THE LOCAL BLEEDING DISORDER COMMUNITY AND TO MEET METRICS ESTABLISHED WITHIN NHF'S ACT INITIATIVE. WASHINGTON UNIVERSITY SCHOOL OF MEDICINE SPONSORED PROJECTS DEPARTMENT CAMPUS BOX 1034 700 ROSEDALE AVENUE ST LOUIS MO 631121408 430653611 501(C)(3) 21351 JGP POSTDOCTORAL RESEARCH GRANT ON BLOOD COAGULATION 37 TRAVEL ASSISTANCE TO FAMILIES INVITED TO ANNUAL MEETING. 111 68886 KEVIN CHILD SCHOLARSHIP AWARD 1 1000 JOSH GORDY EDUCATIONAL SCHOLARSHIP AWARD 2 2000 PART I, LINE 2: 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. X X X X X 0 1 0 0 0 0 0 1 0 VAL BIAS CHIEF EXECUTIVE OFFICER 301438 0 18260 0 1806 0 50263 0 32612 0 404379 0 0 0 JORDANA ZEGER CHIEF OPERATING OFFICER 199401 0 11000 0 2749 0 16848 0 32551 0 262549 0 0 0 JOSEPH KLEIBER SENIOR V.P. OF CHAPTER SER 185575 0 6000 0 4130 0 19253 0 22223 0 237181 0 0 0 MARY ANN LUDWIG V.P. OF DEVELOPMENT 217547 0 11000 0 4349 0 22397 0 11681 0 266974 0 0 0 NEIL FRICK V.P. OF RESEARCH & MEDICAL 137881 0 1000 0 412 0 14094 0 11623 0 165010 0 0 0 JOHN INDENCE V.P. OF MARKETING AND COMM 139403 0 1000 0 631 0 14094 0 11571 0 166699 0 0 0 SANDRA ROTELLINI V.P. OF CHAPTER DEVELOPMEN 129855 0 6000 0 567 0 13154 0 11545 0 161121 0 0 0 MICHELLE RICE V.P. OF PUBLIC POLICY & ST 125217 0 6000 0 516 0 13154 0 31779 0 176666 0 0 0 PART I, LINE 3 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. PART I, LINE 4B PART I, LINE 4B: THE ORGANIZATION MAINTAINS A 457(B) PLAN. 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. 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 11 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, COO AND CONTROLLER ARE ALSO PRESENT ON THE CALL. FORM 990, PART VI, SECTION B, LINE 12C BOARD MEMBERS DISCLOSE IN WRITING ANNUALLY. EMPLOYEES DISCLOSE AT HIRE AND ANNUALLY. CEO/COO MANAGE CONFLICTS FOR EMPLOYEES. 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. FORM 990, PART VI, SECTION C, LINE 19 THE ORGANIZATION MAKES ITS GOVERNING DOCUMENTS AND CONFLICTS OF INTEREST AVAILABLE TO THE PUBLIC UPON REQUEST. THE ORGANIZATION MAKES ITS FINANCIAL STATEMENTS AVAILABLE TO THE PUBLIC ON ITS WEBSITE. FORM 990, PART IX, LINE 11G CONSULTING AND PROFESSIONAL FEES: PROGRAM SERVICE EXPENSES 2,568,001. MANAGEMENT AND GENERAL EXPENSES 334,572. FUNDRAISING EXPENSES 10,864. TOTAL EXPENSES 2,913,437. BANK FEES: PROGRAM SERVICE EXPENSES 0. MANAGEMENT AND GENERAL EXPENSES 15,045. FUNDRAISING EXPENSES 2,548. TOTAL EXPENSES 17,593. FORM 990, PART XI, LINE 9: ADJUSTMENT FOR PRIOR YEAR RECOVERY 30,972. 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 2015, THE ORGANIZATION DID NOT CHANGE ITS SELECTION OF AN INDEPENDENT ACCOUNTANT.