2021-07-06T08:46:22-05:00 2020-12-31 522136830 YAAKOV BORENSTEIN CPA PC 9505 LINDEN AVE BETHESDA MD 208141638 990 2020-01-01 833367375 HAYSTACK PROJECT INC HAYS 3013206872 6005 GLOSTER ROAD BETHESDA MD 20816 JAMES CARO PRESIDENT 3013206872 2021-05-25 true JAMES CARO XXX-XX-XXXX YAAKOV BORENSTEIN CPA PC P00757261 3015305870 2021-07-06 2020 2022-09-23 18:48:47Z JAMES CARO 541 POWELL STREET ANNAPOLIS MD 21401 391539 false X WWW.HAYSTACKPROJECT.ORG X 2019 MD HAYSTACK PROJECT BRINGS TOGETHER THE STAKEHOLDERS CONNECTED TO RARE AND ULTRA RARE CONDITIONS TO EDUCATE THEM AND ASSIST WITH THEIR SELF-ADVOCACY EFFORTS 5 5 0 0 905 145539 92800 246000 0 1025 0 94730 391539 0 0 0 0 0 90493 227161 90493 227161 4237 164378 4237 168615 0 4237 168615 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 AND THEIR TREATMENTS false false 67500 391000 ENGAGED A THIRD PARTY PUBLIC POLICY CONSULTANT TO PROVIDE MONTHLY & AD HOC CALLS WITH PATIENT GROUPS. CALLS WERE FOCUSED ON IDENTIFYING ISSUES RELATED TO SYSTEMATIC BARRIERS TO ACCESS AND TREATMENTS. CONSULTANT PROVIDED GROUPS WITH GUIDANCE ON THE RULES, REGULATIONS, AND LAWS THAT IMPACT PATIENTS' CARE INCLUDING PROPOSALS CURRENTLY PENDING BY POLICY MAKERS. CONSULTANT HELPED COLLECT, COLLATE, AND COMPARTMENTALIZE WHICH PATIENT EXPERIENCES RELATED BACK TO WHICH CURRENT AND PENDING LAWS, 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 WORKING GROUPS SPECIFICALLY TAILORED TO ADDRESS THE NEEDS AND CONCERNS OF MINORITIES (HEAT) AND RARE CANCER PATIENTS (RCPC). 67500 THE ORGANIZATION HIRED A CONSULTING FIRM TO DRAFT A SERIES OF REPORTS ON PATIENT ORIENTED VALUE, WHICH GIVES HEALTH CARE 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 USE THEM TO MAGNIFY THEIR VOICES. 73295 ENGAGED A PROFESSIONAL CONSULTING FIRM TO DRAFT SEVEN COMMENT LETTERS IN RESPONSE TO FEDERAL AGENCY PROPOSALS WHICH IMPACTED RESEARCH, DEVELOPMENT, AND PATIENT ACCESS TO TREATMENTS CRITICAL TO RARE AND ULTRA RARE CONDITIONS. 208295 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 5 5 false false false false false false false true true false false true true true true true false false false false MD X JOSEPH CHIRICO 3013206872 6005 GLOSTER ROAD BETHESDA MD 20816 X JAMES CARO PRESIDENT 1.00 X X 0 0 0 JOSEPH CHIRICO TREASURER 3.00 X X 0 0 0 CHRISTINA NYQUIST DIRECTOR 0.50 X X 0 0 0 BELA SASTRY SECRETARY 1.00 X X 0 0 0 MARC YALE DIRECTOR 0.50 X X 0 0 0 false false false 145539 145539 PROGRAMATIC REPORTING 145140 145140 STAKEHOLDERS EDUCATION 59040 59040 PATIENT GROUP NETWORKING 41820 41820 246000 391539 246000 94127 80000 14127 400 400 10000 10000 1029 500 529 748 748 2270 2270 629 629 OUTSOURCED CONSULTING 117795 117795 BANK CHARGES 163 163 227161 208295 18866 0 4237 168615 4237 168615 0 0 X 4237 168615 4237 168615 4237 168615 164378 X false false false X 145539 145539 246000 246000 391539 391539 391539 391539 391539 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 AND THEIR TREATMENTS FORM 990, PAGE 2, PART III, LINE 4A ENGAGED A THIRD PARTY PUBLIC POLICY CONSULTANT TO PROVIDE MONTHLY & AD HOC CALLS WITH PATIENT GROUPS. CALLS WERE FOCUSED ON IDENTIFYING ISSUES RELATED TO SYSTEMATIC BARRIERS TO ACCESS AND TREATMENTS. CONSULTANT PROVIDED GROUPS WITH GUIDANCE ON THE RULES, REGULATIONS, AND LAWS THAT IMPACT PATIENTS' CARE INCLUDING PROPOSALS CURRENTLY PENDING BY POLICY MAKERS. CONSULTANT HELPED COLLECT, COLLATE, AND COMPARTMENTALIZE WHICH PATIENT EXPERIENCES RELATED BACK TO WHICH CURRENT AND PENDING LAWS, 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 WORKING GROUPS SPECIFICALLY TAILORED TO ADDRESS THE NEEDS AND CONCERNS OF MINORITIES (HEAT) AND RARE CANCER PATIENTS (RCPC). FORM 990, PAGE 6, PART VI, LINE 11B EACH MEMBER REVIEWS AND APPROVES FORM 990 BEFORE FILING. FORM 990, PAGE 6, PART VI, LINE 12C DIRECTOR REVIEW AND APPROVE ANY CONFLICT OF INTEREST ISSUES. FORM 990, PAGE 6, PART VI, LINE 19 FORM 990 AVAILABLE FOR PUBLIC INSPECTION.