2022-05-05T11:05:37-05:00 2021-12-31 522136830 YAAKOV BORENSTEIN CPA PC 9505 LINDEN AVE BETHESDA MD 208141638 990 2021-01-01 833367375 HAYSTACK PROJECT INC HAYS 2023609985 640 9TH STREET SW WASHINGTON DC 20024 JAMES CARO BOARD MEMBER 3013206872 2022-05-05 true JAMES CARO XXX-XX-XXXX YAAKOV BORENSTEIN CPA PC P00757261 3015305870 2022-05-05 2021 2022-09-23 18:48:47Z X DEANNA DARLINGTON 640 9TH STREET SW WASHINGTON DC 20024 482707 false X WWW.HAYSTACKPROJECT.ORG X 2019 DC HAYSTACK PROJECT BRINGS TOGETHER THE STAKEHOLDERS CONNECTED TO RARE AND ULTRA RARE CONDITIONS TO EDUCATE THEM AND ASSIST WITH THEIR SELF-ADVOCACY EFFORTS 9 9 0 0 145539 482707 246000 0 0 0 391539 482707 250 0 3000 0 0 227161 360803 227161 364053 164378 118654 168615 287269 0 168615 287269 X HAYSTACK PROJECT BRINGS TOGETHER THE STAKEHOLDERS CONNECTED TO RARE AND ULTRA RARE CONDITIONS TO EDUCATE AND ADVOCATE FOR PUBLIC POLICIES THAT RECOGNIZE THE UNIQUE CIRCUMSTANCES OF EXTREMELY RARE CONDITIONS, THEIR DIAGNOSIS, TREATMENT, AND CARE. false false 95050 250 THE ORGANIZATION HIRED CONSULTANTS TO DRAFT A SERIES OF REPORTS ON VALUE WHICH GIVES PROVIDERS DEEPER INSIGHTS INTO THE PATIENTS' PERSPECTIVES AND PERCEPTION OF VALUE. THIS PROVIDES PATIENTS WITH A WAY TO COME TOGETHER AND MAGNIFY THEIR VOICES SO THEY ARE BETTER HEARD BY GROUPS AND AUTHORITIES THAT MAKE COVERAGE DECISIONS AND FORMULARY DESIGNATIONS. THE ORGANIZATION MAINTAINS A LIBRARY OF THESE REPORTS SO THAT MEMBER ORGANIZATIONS CAN LEARN FROM THEM, CONDUCT THEIR OWN AND USE THEM TO MAGNIFY THEIR VOICES. 118200 118200 ENGAGE CONSULTANTS TO DRAFT COMMENT LETTERS IN RESPONSE TO FEDERAL AGENCY PROPOSALS WHICH IMPACT RESEARCH, DEVELOPMENT AND PATIENT ACCESS TO TREATMENTS CRITICAL TO RARE AND ULTRA RARE CONDITIONS. 120865 120865 ENGAGE THIRD PARTY CONSULTANTS TO PROVIDE MONTHLY AND AD HOC CALLS WITH PATIENTS GROUPS. CALLS WERE FOCUSED ON IDENTIFYING ISSUES RELATED TO SYSTEMIC BARRIERS TO ACCESS TO CARE AND TREATMENTS. CONSULTANTS PROVIDED GROUPS WITH GUIDANCE ON THE RULES, REGULATIONS, AND LAWS THAT IMPACT PATIENT CARE INCLUDING PROPOSALS CURRENTLY PENDING WITH POLICY MAKERS. CONSULTANTS HELPED COLLECT, COLLATE AND COMPARTMENTALIZE WHICH PATIENT EXPERIENCES RELATED BACK TO WHICH CURRENT AND PENDING LAW, REGULATIONS AND PROPOSALS. PATIENT GROUPS WERE PROVIDED A FORUM FROM WHICH THEY CAN LEARN FROM EACH OTHER. AS PART OF THIS EFFORT, THE ORGANIZATION HAS CREATED THE ADVOCACY EMPOWERMENT INSTITUTE (AEI). THE END GOAL OF AEI IS TO BETTER ARM PATIENTS FOR THE IMPORTANT ROLE OF SELF-ADVOCACY. THE ORGANIZATION HAS ALSO CREATED SPECIAL MEMBER FOCUSED PROGRAMS SPECIFICALLY TAILORED TO ADDRESS THE NEEDS AND CONCERNS OF PAYORS, MINORITIES, AND RARE CANCER PATIENTS. CONSULTANTS ALSO RESEARCH, MODERATE, AND SUMMARIZE A MONTHLY SPEAKER SERIES. 334115 true false false true false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false true 0 0 0 false false false false false false false false X 9 9 false false false false false false false false false false true true true false true false true false false DC X JOSEPH CHIRICO 7034721163 6005 GLOSTER ROAD BETHESDA MD 20816 DEANNA DARLINGTON CEO 5.00 X 3000 0 0 JAMES CARO BOARD MEMBER 0.50 X 0 0 0 CHRISTINA NYQUIST BOARD MEMBER 0.50 X 0 0 0 LISA SHEELMAN BOARD MEMBER 0.50 X 0 0 0 SUSAN THORNTON BOARD MEMBER 0.50 X 0 0 0 CHEVISE TURNER BOARD MEMBER 0.50 X 0 0 0 MARC YALE BOARD MEMBER 0.50 X 0 0 0 JOSEPH CHIRICO TREASURER 0.50 X 0 0 0 BELA SASTRY SECRETARY 0.50 X 0 0 0 3000 false false false M KAY SCANLON 1401 PORTER ST 418 BALTIMORE MD 21230 CONSULTING 142960 1 4127 478580 482707 482707 250 250 3000 3000 110745 90000 20745 300 300 20000 20000 1663 600 1063 2859 2859 1600 1600 OUTSOURCED CONSULTING 223265 223265 BANK CHARGES 371 371 364053 334115 29938 0 168615 287269 168615 287269 0 0 X 168615 287269 168615 287269 168615 287269 118654 X false false X 145539 482707 628246 246000 246000 391539 482707 874246 874246 391539 482707 874246 1.00000 1.00000 0.00000 0.00000 X false false false false false false false false false false FORM 990 - ORGANIZATION'S MISSION HAYSTACK PROJECT BRINGS TOGETHER THE STAKEHOLDERS CONNECTED TO RARE AND ULTRA RARE CONDITIONS TO EDUCATE AND ADVOCATE FOR PUBLIC POLICIES THAT RECOGNIZE THE UNIQUE CIRCUMSTANCES OF EXTREMELY RARE CONDITIONS, THEIR DIAGNOSIS, TREATMENT, AND CARE. FORM 990, PAGE 2, PART III, LINE 4C ENGAGE THIRD PARTY CONSULTANTS TO PROVIDE MONTHLY AND AD HOC CALLS WITH PATIENTS GROUPS. CALLS WERE FOCUSED ON IDENTIFYING ISSUES RELATED TO SYSTEMIC BARRIERS TO ACCESS TO CARE AND TREATMENTS. CONSULTANTS PROVIDED GROUPS WITH GUIDANCE ON THE RULES, REGULATIONS, AND LAWS THAT IMPACT PATIENT CARE INCLUDING PROPOSALS CURRENTLY PENDING WITH POLICY MAKERS. CONSULTANTS HELPED COLLECT, COLLATE AND COMPARTMENTALIZE WHICH PATIENT EXPERIENCES RELATED BACK TO WHICH CURRENT AND PENDING LAW, REGULATIONS AND PROPOSALS. PATIENT GROUPS WERE PROVIDED A FORUM FROM WHICH THEY CAN LEARN FROM EACH OTHER. AS PART OF THIS EFFORT, THE ORGANIZATION HAS CREATED THE ADVOCACY EMPOWERMENT INSTITUTE (AEI). THE END GOAL OF AEI IS TO BETTER ARM PATIENTS FOR THE IMPORTANT ROLE OF SELF-ADVOCACY. THE ORGANIZATION HAS ALSO CREATED SPECIAL MEMBER FOCUSED PROGRAMS SPECIFICALLY TAILORED TO ADDRESS THE NEEDS AND CONCERNS OF PAYORS, MINORITIES, AND RARE CANCER PATIENTS. CONSULTANTS ALSO RESEARCH, MODERATE, AND SUMMARIZE A MONTHLY SPEAKER SERIES. FORM 990, PAGE 6, PART VI, LINE 11B EACH MEMBER REVIEWS AND APPROVES FORM 990 BEFORE FILING. FORM 990, PAGE 6, PART VI, LINE 15A APPROVED BY BOARD OF DIRECTORS. FORM 990, PAGE 6, PART VI, LINE 19 FORM 990 AVAILABLE FOR PUBLIC INSPECTION.