2024-05-12T20:19:26-07:00 2023-12-31 990EZ 2023-01-01 843216292 PRIMARY ALDOSTERONISM FOUNDATION PRIM 6027260665 3533 E Ahwatukee CT Phoenix AZ 85044 Michael McGowan Principal Officer 6024814123 2024-05-14 Michael McGowan 999009999 1 1 11 1 AAL2 2023 2023-04-26 12:10:37Z X https://www.primaryaldosteronism.org X X 35605 X 35498 0 0 54 0 0 0 0 0 0 0 53 39 14 0 35566 50 0 54698 21281 0 0 1536 77565 -41999 84721 0 42722 X 59621 48023 0 0 30300 0 89921 48023 5200 5301 84721 42722 The Primary Aldosteronism Foundation is dedicated to promoting optimum diagnosis and treatment of primary aldosteronism by raising awareness of the disease, fostering research, and providing support to patients and medical professionals worldwide. We strive to accomplish our mission by: * Raising awareness in the research and medical communities, and the general public about the disease * Fostering research to improve the understanding of the disease and find new, more effective ways to diagnose and treat it * Encouraging early diagnosis and treatment to prevent patients from suffering end-organ damage and other complications of the disease * Working with regional, national, and international healthcare organizations to improve the availability and quality of care for patients * Being a resource for information to health care professionals, researchers, and patients * Providing medical advocacy, and support to patients and their families Patient Discovery. PAF is partnering with an information technology expert (Atomo Health) and 3 health systems (UTSW, Monash University, and the University of Calgary) to expedite the design of an AI-based model to find undiagnosed patients. Atomo Health developed the prototype of an AI-based patient finding model. The technology's average predictive value (i.e., F1 score) ranges from 0.25 to 0.30. At 0.78, not only does the model's predictability exceed average scores, it is superior to the predictive value of the disease's screening test. The prototype is complete, and the full model is expected to be available in 2025. 0 5780 Availability of Care. Although 35% of patients can be surgically cured, and all other cases medically treated, care is often unavailable for most patients. In collaboration with two medical societies (SIRWEB, AAES), PAF is spearheading the development of a geolocation tool to help patients find effective care locally. An inventory of medical services available in the US has been completed. Preliminary results are available, and a detailed report will be presented in June 2024 at the Annual Meeting of the PA Alliance. The geolocation tool is expected to become available in 2025. 0 14450 Delivery of Care. Studies and clinical trials are underway that will soon significantly improve delivery of care to patients with PA. PAF is contractually involved as co-investigator and/or patients' representative in several of them (e.g., PET scan tracers, new medical therapies). PAF is involved as panel member in the revision of the disease's clinical guidelines, PAF managed the initial phase of a research study on barriers to care. Data collection and analysis have since been contracted out to Monash University. Completion is expected in 2025. 0 14448 Community of Practice. Improving standards of care requires knowledge translation and sharing to integrate our 3 programs: Patient Discovery, Availability of Care, and Delivery of Care. Through capacity building initiatives focused on surveillance and benchmarking, stakeholders will gain insight into effective provision of care, share successes and challenges, and learn from clinical findings as a group and in preferential ways such as direct access to ongoing clinical trials. We have begun planning phase for this initiative, which will continue into 2025. 0 5780 Advocacy. PAF interacts with stakeholders across the healthcare sector to influence policies and promote the prioritization of PA diagnosis and treatment by public health and regulatory agencies. Our accomplishments include: 1) Oversight of the PA Alliance, which includes coordinating 30 member organizations, supporting six programs, co-creating five sector-wide interventions, hosting the annual meeting, and delivering mid-year reports. 2) PAF has co-authored and been featured in five publications to date including two scientific publications, two mainstream publications. 3) PAF has gathered some 820 signatures to an Open Letter in support of our mission across 36 countries. 4) PAF supports patients through social media. We have made over 1,000 Facebook posts and have more than 3,600 Facebook followers. On X, formerly know as Twitter, we have made 30 posts and have attracted more than 130 followers. 0 11559 Patient Support. PAF provides direct assistance and personalized support to patients who have or suspect they may have PA to help them find adequate and timely care. Annually, PAF assists over 600 new patients through email and phone. Our website offers a comprehensive source of information about the diagnosis and treatment of the disease for both patients and clinicians. We provide a directory of specialists, centers of excellence, and other specialized medical centers for patients worldwide to receive care. The website also includes patient stories, lifestyle advice, medical news, and a curated database of research articles and clinical studies. In 2023, our website attracted 85,000 unique visitors. 0 5780 57797 Marianne Leenaerts Director, Management Consultant 40 54698 0 0 Michael McGowan Director, Principal Officer 10 0 0 0 Rene Moreno Director 5 0 0 0 Deborah Kelly Director 5 0 0 0 Tanya Hanner Director 0 0 0 0 Jo-Ann Shaw Director 1 0 0 0 Pamela Lincoln Director 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 Michael McGowan 3533 E Ahwatukee CT Phoenix AZ 85044 6024814123 0 0 0 0 0 0 0 0 0 0 0 NONE NONE 1 X 1225 400 7307 88186 35498 132616 0 0 0 0 0 0 0 0 0 0 0 1225 400 7307 88186 35498 132616 95000 37616 0 0 5 5 54 64 0 0 10 0 0 10 0 0 0 0 0 0 132690 0 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED Form 990-EZ, Part I, Line 10 Contribution to Jericho Road Pasadena, an non-profit organization that supports other charities in their operation Form 990-EZ, Part I, Line 16 Description;Amount^Bank charges;209|Government fees;10|Grant acquisition expenses;269|Memberships and subscriptions;220|Special events;200|Training and conferences;306|Website hosting;184|Website software licenses;138^Total;1536^ Form 990-EZ, Part II, Line 26 Accounts Payable