2023-10-16T11:00:42-07:00 2022-12-31 990 2022-01-01 833367375 HAYSTACK PROJECT INC HAYS 2023609985 937 Emerson Dr Severna Park MD 21146 Jennifer Wappaus Treasurer 4107071419 2023-10-16 1 0 11 1 AAL2 X X 2022 2023-04-26 12:10:37Z X Chevese Turner 937 Emerson Park Dr Severna Park MD 21146 476038 0 X haystackproject.org X 2019 MD Haystack Project brings together stakeholders connected to rare and ultra rare medical conditions to educate them and assist them with their self advocacy efforts. 7 7 0 0 0 0 478580 476038 4127 0 0 0 482707 476038 0 0 3000 60000 0 50 361053 320641 364053 380641 118654 95397 287268 382665 0 0 287268 382665 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. 0 0 70000 0 The organization hired consultants to draft a report on value which gives payer and value framework developers deeper insights into the patients perspectives and perception of value. This provides patients 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 members can learn from them, conduct their own and use them to magnify their voices. 152000 0 Engage consultants to draft comment letters in response to federal agency proposals and legislative requests for information which impact research development and patient access to treatments critical to rare and ultra rare conditions. 65697 0 Engage third party consultants to provide monthly and ad hoc calls with patient groups. Calls were focused on identifying issues related to systematic 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 helps 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, engage, moderate and sumarize a monthly speaker series. 0 0 0 287697 1 0 0 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 0 0 0 0 0 0 0 0 0 0 0 X 7 7 0 0 0 0 0 0 0 1 0 0 0 1 1 1 0 1 0 1 0 0 X joseph chirico 7034721163 1028 Clark Point Dr White Stone VA 22578 Chevese Turner CEO 5 X 3000 0 0 Susan Thornton Board Member 0.5 X 0 0 0 Victoria Blatter Board Member 0.5 X 0 0 0 Marc Yale Boars Member 0.5 X 0 0 0 Lisa Steelman Board Member 0.5 X 0 0 0 Christina Nyquist Board Member 0.5 X 0 0 0 Lynn Taylor Board Member 0.5 X 0 0 0 Joseph Chirico Treasurer 3 X 0 0 0 3000 0 0 0 0 0 0 M Kay Scanlan 1401 Porter St Apt 418 Baltimore MD 21230 Consulting 142960 1 0 11038 0 0 0 465000 0 476038 0 0 0 0 0 0 0 476038 0 0 0 0 60000 0 60000 100384 70030 30354 0 0 0 20000 20000 0 1010 960 50 0 0 0 800 0 800 Banking Fees 780 0 780 0 Outsourced Consulting 187501 187501 0 0 Research 1100 1100 0 Subscription 9066 9066 0 0 380641 287697 92894 50 287268 382665 287268 382665 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 X 287268 382665 0 0 287268 382665 287268 382665 95397 0 0 0 0 0 X 0 0 0 X 0 94730 391539 482707 478562 1447538 0 94730 391539 482707 478562 1447538 1447538 0 0 0 0 0 0 0 0 0 0 0 0 94730 391539 482707 478562 1447538 X 0 1 0 0 0 0 0 0 0 0 0 Schedule C, Part II-B, Line 1 Occasional contact with House and Senate to educate and advocate for legislative efforts that support the mission of the organization. Form 990, Part VI, Section A, Line 8b All authority and actions are done by and through the board of directors. Form 990, Part VI, Section B, Line 11b The organizations Treasurer, President and the entire board review the document and submit comments and changes to the consulting team preparing the document. Form 990, Part VI, Section B, Line 15 Compensation for the President is determined by the Board of Directors. This process is completed annually and was completed at the beginning of the 2022 fiscal year. Form 990, Part VI, Section C, Line 19 Relevant policy and financial documents are made available upon request to members and interested parities. In addition key policies and 990 filings are posted to the organization website. An extension request was filed and approved by the IRS.