2024-11-07T05:30:01-00:00 2023-12-31 621813735 Foundation Group Inc 2451 Atrium Way Suite 300 Nashville TN 37214 990 2023-01-01 833367375 Haystack Project Inc HAYS 6143546036 637 Emerson Place Severna Park MD 21146 Kara Berasi CEO 6143546036 2024-11-07 true Shannon M Evans EA P01691628 6153619445 2024-11-07 2023 2024-10-15 13:58:12Z Kara Berasi 637 Emerson Place Severna Park MD 21146 226966 false X www.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. 9 8 0 8 0 476038 226966 0 0 0 476038 226966 500 0 60000 36000 0 0 320641 398158 380641 434658 95397 -207692 382665 174973 0 382665 174973 Haystack Project brings together stakeholders connected to rare and ultra rare medical conditions to educate them and assist them with their self advocacy efforts. false false 74513 500 The organization hired consultants to draft a report on value which gives payer and value framework developers deeper insights into the patients perspective 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 members can learn from them, conduct their own and use them to magnify their voices. 216423 Engage consultants to draft comment letters in response to federal agency proposals and legislative request for information which impact research development and patient access to treatments critical to rare and ultra rare conditions. 64046 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 help collect, collate and compartmentalize which patient experiences related back to which current and pending law, regulations and proposals. Patient Groups were provided a forum 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 a special member focused program specifically tailored to address the needs and concerns of payors, minorities and rare cancer patients. Consultants also research, engage, moderate and summarize a monthly speaker series. 354982 true true 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 true true true false false false false false false false false false true 7 0 true 0 false false false false false false false false false false false false X 9 8 false false false false false false false true true false false true true true true true false true false false MD X X Joe Chirico 6143546036 637 Emerson Place Severna Park MD 21146 Chevese Turner Past CEO / Secretary 020.00 X X 36000 0 0 James Caro Director 001.00 X 0 0 0 Marc Yale Patient Representative 001.00 X 0 0 0 Christina Nyquist Director 001.00 X 0 0 0 Lynn Taylor Director 001.00 X 0 0 0 Lisa Steelman Director 001.00 X 0 0 0 Victoria Blatter Director 001.00 X 0 0 0 Jenn Wappaus Treasurer 001.00 X X 0 0 0 Susan Thornton Patient Representative 001.00 X 0 0 0 Kara Berasi Current CEO 005.00 X 0 0 0 36000 false false false Consilium Strategies 900 East Fort Road Unte 428 Baltimore MD 21230 Research and Comment Letters 177750 1 226966 226966 226966 X 500 500 0 0 0 36000 36000 0 0 0 0 0 0 0 18000 18000 24000 24000 0 343257 282403 60854 1419 1419 822 822 576 576 0 0 0 0 0 0 0 0 800 800 Books, Subscriptions References 9284 9284 0 434658 354982 79676 0 382665 174973 382665 174973 0 0 X 382665 174973 382665 174973 382665 174973 -207692 X false false false X 94730 391539 482707 476038 226966 1671980 94730 391539 482707 476038 226966 1671980 1671980 1671980 X 0.00000 RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED true true false false true false true 24000 false false 24000 false false II-B 1a, 1b, 1e, and 1g The organization utilizes volunteers and paid consultants to research policies and provide education for legislators on rare and ultra-rare disease issues. Connect 4 Strategies Founder of Haystack Project Inc. 60000 Research and Policy Support false Form 990, Part VI, Section B, Line 11b The organization reviews the 990 form at a board meeting piror to submitting to the IRS. Form 990, Part VI, Section B, Line 12c The organization enforced compliance with its conflict of interest policy by reviewing it periodically at board meetings. Form 990, Part VI, Section C, Line 19 The organization makes its governing documents, conflict of interest policy, and financial statement available to the public upon request Form 990, Part VI, Section B, Line 15a The organization uses the following methods to establish compensation packages for its employees Approval by the Board Form 990, Part IX, Line 11g Other Professional Fees includes work such as comment letters, research, administrative support, and regulatory support.