2025-10-16T12:46:41-00:00 2024-12-31 621813735 Foundation Group Inc 2451 Atrium Way Suite 300 Nashville TN 37214 990 2024-01-01 833367375 Haystack Project Inc HAYS 6143546036 637 Emerson Place Severna Park MD 21146 Kara Berasi CEO 6143546036 2025-10-16 true true Andrew D Payne EA P02188892 6153619445 2025-10-16 2024 2025-03-06 01:10:19Z Kara Berasi 637 Emerson Place Severna Park MD 21146 759000 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. 10 9 0 9 0 226966 759000 0 0 0 226966 759000 500 0 0 36000 36000 0 0 398158 489956 434658 525956 -207692 233044 174973 402109 0 174973 402109 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 434099 The organization brings together patient organizations representing patients suffering from or caring for patients with extremely rare diseases. This is accomplished through educating policymakers and stakeholders about the barriers FDA processes and insurance frameworks create and perpetuate in rare and ultra-rare diseases and help them recognize the circumstances of extremely rare conditions and treatments and expand incentives critical to ensuring they can reach patients. Policy Initiatives and Rare Disease Priorities Haystack Project works with patients to help them learn how to advocate for their communities and improve. Modernization of Rare Disease Clinical Trials Work focused on rethinking clinical trials for rare diseases. Patient Education Engagement Speaker series where we bring various experts to speak to issues related to rare diseases. Member organizations are able to listen and ask questions. Also conduct member meetings to educate about current events, Haystack initiatives, and help answer questions. 434099 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 false 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 10 9 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 Kara Berasi CEO 020.00 X X 36000 0 0 Chevese Turner Secretary 001.00 X 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 Board Chair / Patient Representative 001.00 X X 0 0 0 Jim Caro Director 001.00 X 0 0 0 Kristen Wheeden Patient Representative 001.00 X 0 0 0 36000 false false false Consilium Strategies 900 East Fort Road Unte 428 Baltimore MD 21230 Research and Comment Letters 205000 Connect 4 Strategies 6005 Gloster Road Bethesda MD 20816 Research and Comment Letters 185000 2 759000 759000 759000 X 0 0 0 0 36000 36000 0 0 0 0 0 0 0 28500 28500 30000 30000 0 425550 363050 62500 169 169 857 857 0 0 0 0 0 0 0 4000 4000 0 880 880 0 525956 434099 91857 0 174973 402109 174973 402109 0 0 X 174973 402109 174973 402109 174973 402109 X 233044 -5908 X false false false X 391539 482707 476038 226966 759000 2336250 391539 482707 476038 226966 759000 2336250 1197325 1138925 2336250 0.48750 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED true true false false true false true 30000 false false 30000 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 185000 Research and Policy Support false Joseph Chirico Family of Founder 27000 Accounting 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. Form 990, Part XI, Line 9 The previously reported cash balance was overstated by 5,908.