Fibromuscular Dysplasia Society of America Inc

The Fibromuscular Dysplasia Society of America (FMDSA) was incorporated in 2003, at which time there was no organization that represented Fibromuscular Dysplasia(FMD) or the patients who were diagnosed with the disease. 

Before FMDSA, patients found each other on an online support group. From the many discussions and stories shared, a universal lack of knowledge, patient support and awareness of FMD were recognized. FMDSA has successfully raised awareness, developed a patient registry and made a difference in countless lives of those affected with this disease.

There is no known cause or cure for the disease and there are no set protocols for treating it. FMD causes arteries to form abnormally creating areas of narrowing or stenosis. Patients can suffer dissections (tears) of the arterial wall, strokes, aneurysms, heart attacks, renal failure and death, depending on which arteries are affected and the severity of the disease.

Ninety percent of FMD patients are women but men and children are also diagnosed with this disease. FMD is considered a rare disease but based on several research studies, many estimate that FMD is underdiagnosed and as many as 5 million Americans may be affected. In 2009, FMD made the front page of The Wall Street Journal “The Rare Disease That Isn’t” by Tom Burton. We can tell you, we have newly diagnosed patients contacting us almost daily.

Some of our very early accomplishments that have had a huge impact on awareness and education were getting the disease listed as a "Rare Disease" and getting the National and American Stroke Associations to recognize the disease as a cause of stroke. Until this recognition, the thought was that FMD primarily affected the kidneys but as research has confirmed, FMD can affect all arterial beds including the carotid and coronary arteries. 

We have been very successful in raising much needed awareness of the disease, educating medical professionals, supporting patients from all over the world and funding the United States Registry for Fibromuscular Dysplasia. Currently, we have 14 centers/hospitals in the United States volunteering their time to participate in the Patient Registry.

To date, over 1,500 patients have participated in the registry and over 20 articles/abstracts/manuscripts have been published from the data coming from our registry. With the registry, researchers can have data, doctors can develop protocols, and patients can have Hope.

As much as FMDSA has accomplished over the years, we  need funding to continue all of our great programs. With recent findings and more interest in FMD than at any other time in history, we must keep up the momentum we have built and contine moving at an even faster pace. We are facing major funding obstacles during a time when new and on going resaerch is so promising.

Please consider a donation to help us continue our great programs and research.

Thank you for taking the time to learn about FMD and FMDSA.