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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. |
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