FIBROMUSCULAR DYSPLASIA SOCIETY OF AMERICA INC

Programs

1. In 2007, FMDSA laid the foundations for the creation of an FMD medical data registry with the goal of increasing understanding of FMD and providing physicians and researchers with a vehicle to capture and analyze characteristics associated with the disease to identify potential markers and commonly used treatment modalities. The Michigan Clinical Outcomes Research and Reporting Program at the University of Michigan is the coordinating center for the registry. Patient enrollment in the FMDSA Registry increased from 4598 patients at the end of 2024 to 5118 patients at the end of 2025. There are 21 actively participating Medical registry sites. New sites in 2025 included The University of Pennsylvania and Virginia Mason Franciscan Health.

   $134,965 spent
   100% of program spending

2. Patient support is a large program due to the significant increase in the number of patients diagnosed with FMD annually. The organization continues to grow Volunteer Support Networks with volunteers across the United States and internationally. Patient support also includes social media outreach, including Inspire, Instagram, and Facebook, where thousands of patients participate. The organization is also active on Twitter, allowing patients and physicians to communicate directly. Materials and videos are continuously added to the FMDSA website and YouTube channel, and we offer nearly sixty FMD related videos in multiple languages and work with our international colleagues who offer additional language specific materials. FMDSA continues to host virtual patient meetings for all patients in the US - and worldwide.

3. Patient and family member education services. The organization provides educational support and resources for patients educate their family, friends, and healthcare providers about FMD with written materials and videos. Resources that help communicate the complex medical language and physiological elements of FMD are laid out in easy-to-understand terms and materials include a Public Service Announcement and tailored materials designed to bridge the gaps between patients and physicians. The Program also includes educational work with media outlets, other organizations, journals, speaking engagements, and articles. It is a rare day when we are not contacted by a newly diagnosed patient. We have seen the diagnosis rate grow in direct proportion to our programs. We also participate in events such as the Cleveland & Detroit Marathons, along with other high profile well attended events, to help increase awareness and to raise funds to support our programs.

4. Physician, research specialist, and other healthcare provider education. We educate medical professionals worldwide at meetings such as the International StrokeConference, Hospital led Conferences, Hospital Grand Rounds, and Research Meetings. The awareness, education, and research happening around the world is a direct result of the seeds FMDSA has been planting since 2003.

5. In person meetings. In 2025, the organization participated in in-person meetings, including the American Heart Association Scientific Sessions, the VanSCAD meeting in Vancouver, Canada, the Atrium Health Southeast FMD Patient Symposium, and the Kentucky Neuroscience Expo. The result of this participation is patient representation and awareness of FMD patient perspectives for medical community. It has facilitated improved medical knowledge, the development of critical partnerships and research activity. We maintain a research database on the website which contains medical findings from the FMDSA patient registry, and from other researchers for patients. There are also PowerPoint presentations and videos available for healthcare providers.

6. Registry funding. FMDSA has been the sole source of funding and has been the sole sponsor of the North American FMD Registry since 2008. The first participant's data was entered in January 2009. Patient data is collected and rigorously analyzed to learn more about the disease. Research from the date contained in this registry has contributed to the identification of genetic variants connected to FMD (PHARCTR1, ATP281, LRP1, and LIMA1), and in 2024, a key driver gene called UBR4 was discovered. This was a huge advance. Based on the associated genes, researchers believe that 3-5% of the U.S. population may be afflicted with FMD.

7. When held in person, FMDSA Conferences bring together FMD patients, including those who have had spontaneous coronary dissection (SCAD), caregivers, and medical professionals. These meeting provides an opportunity for patients to meet others also affected. FMDSA also hosts a separate meeting with researchers to discuss updates and current and future research projects. The forum has provided a platform for research projects, including blood draws, saliva collection, and quality-of-life studies. There is no other meeting in the world where patients have the opportunity to participate in research. Most recently, FMDSA has also participated in and coordinated Zoom webinars and, in 2025, the Annual Conference was held as a virtual event, to support broader, national and global participation.

8. One of our most important charters is to educate patients and families about FMD. We offer educational materials, videos, a research section, news and events, and contacts for patients worldwide. The website is a resource for patients, family members, and medical professionals worldwide. FMDSA is the premier resource of FMD information for the layperson and an excellent place for physicians to easily find medical articles and abstracts. The FMDSA website also offers community events for those wanting to get more involved. FMDSA is the recognized leader in FMD support and resources.

The 8 programs described on its FY2025 Form 990-EZ. Program spending in total: $134,965.