More Than Two Decades
of Progress for FMD
From a grassroots family mission to a global registry of over 5,100 patients — a journey of awareness, advocacy, research, and hope.
Jeffrey W. Olin, D.O., F.A.C.C., F.A.H.A., M.S.V.M. Professor of Medicine (Cardiology) Mount Sinai Fuster Heart Hospital Director, Vascular Medicine and Vascular Diagnostic Laboratory Icahn School of Medicine at Mount SinaiFMDSA Officially Incorporated
On March 11, 2003, the Fibromuscular Dysplasia Society of America was incorporated and later that year received public charity status. Founded by Rich and Susan Gould (whose daughter was diagnosed with FMD), alongside Marie Yeh and Pamela Mace, RN, the organization launched to support patients and advance research into a poorly understood disease.
First Medical Advisory Board
In 2004, FMDSA established its inaugural Medical Advisory Board with Dr. Susan Begelman and Dr. Jeffrey W. Olin as founding members, bringing clinical expertise and scientific direction to the growing organization.
NORD Associate Membership
In 2005, FMDSA became an Associate Member of the National Organization for Rare Disorders (NORD), strengthening collaboration with the broader rare disease community and expanding opportunities for advocacy and education.
FMD Registry Designed & Built
The University of Michigan (MCORRP) was selected as the data coordinating center. Over two years, the team — led by Dr. Kim Eagle — designed the database and built the infrastructure to support a national research effort, with the first enrollment expected soon after.
First Annual Patient Conference
In 2008, Pam Mace, RN organized the inaugural FMDSA Annual Patient Conference in Westlake, Ohio — launching an enduring tradition of education, community building, and evidence-based information sharing for patients and families.
First Registry Patient Enrolled & National Media Coverage
The first patient was enrolled in the FMD Registry. That same year, journalist Thomas M. Burton of The Wall Street Journal published a front-page article: "Fibromuscular Dysplasia: The Rare Disease That Isn't — Often Underdiagnosed, FMD May Afflict Up to 5% of Americans." Within minutes, Dr. Olin's inbox flooded with inquiries from across the U.S. and worldwide — the single greatest awareness moment in FMD history to that point.
VIVA Foundation $50,000 Grant
The VIVA Foundation contributed a generous $50,000 donation to FMDSA, significantly advancing research and educational initiatives and helping sustain the growing national registry.
Landmark Publication in Circulation
"The United States Registry for Fibromuscular Dysplasia: Results in the First 447 Patients" was published in the high-impact journal Circulation. With 14 participating medical centers, this was the first large-scale clinical characterization of FMD — providing accurate, comprehensive data never previously available.
AHA Scientific Statement & First International Symposium
The American Heart Association commissioned a landmark scientific statement on FMD, chaired by Drs. Jeffrey Olin and Heather Gornik, published in Circulation. That same year, the First International FMD Research Network Symposium convened global experts to share research and establish international partnerships.
First Belgian National FMD Meeting
The first Belgian National Meeting on Fibromuscular Dysplasia was held, further strengthening international engagement and expanding the growing global network of FMD researchers and clinicians.
Second International FMD & SCAD Symposium — Cleveland
Organized largely by Dr. Heather Gornik, this symposium in Cleveland brought together global experts studying both FMD and spontaneous coronary artery dissection (SCAD), deepening understanding of the strong connection between both conditions.
International Symposia: Belgium & Warsaw
In 2018, experts gathered in Belgium for "Revisiting Fibromuscular Dysplasia and Related Vascular Diseases." In 2019, the Second International Symposium on FMD and Related Vascular Diseases was held in Warsaw, Poland — each meeting advancing the global science of FMD.
First International Consensus Guidelines Published
Chaired by Dr. Heather Gornik and Dr. Alexandre Persu, the First International Consensus on the Diagnosis and Management of Fibromuscular Dysplasia was published — providing standardized clinical guidance for physicians worldwide and forming the global foundation for FMD care today.
Global Genes "Champion of Hope" Award
FMDSA received the prestigious Global Genes "Champion of Hope" Award, recognizing the organization's leadership in rare disease advocacy and its meaningful impact on improving the lives of patients living with FMD.
North American Registry — 5,100+ Patients
A Canadian center joined the registry, prompting its renaming as the North American Registry for Fibromuscular Dysplasia. The registry now spans 22 active medical centers with over 5,100 patients enrolled. Centers in Dallas, TX and Sydney, Australia are expected to join next, making this a truly international research resource.
Happy Anniversary FMDSA — The Work Continues
Today FMDSA celebrates 23 years of transforming FMD from a largely unknown condition into a well-characterized disease with international guidelines, a global research network, and a vibrant patient community. Critical questions about causes, genetics, and new therapies remain — but the foundation for answers has never been stronger, thanks to patients, families, researchers, and advocates worldwide.
Be Part of the Next Chapter
The future of FMD research depends on continued community involvement. Your participation — in the registry, in awareness efforts, and in research support — directly advances our understanding of this disease.
Since ancient times and across many cultures, the tree has long been a symbol of many things, including wisdom, protection, strength, inter-connectivity, and life itself. We’ve chosen the tree to represent the Fibromuscular Dysplasia Society of America for these reasons, and because the tree’s branches and roots signify the arteries affected by this disease. The tree’s branches, reaching upward and outward, provide protection and shelter, and represent our mission to help those who’ve been diagnosed with FMD. Trees, strengthened by their continuously spreading roots, symbolize how as we grow together we are stronger and more resilient. As with its growth from a delicate sapling to a giant robust tree, and as its branches and roots grow and spread, the tree symbol represents how we’ve evolved and continue to promote research, education and patient support throughout the years. Together we can achieve much, as we strive to reach for the sky.