FIBROMUSCULAR DYSPLASIA SOCIETY OF AMERICA INC

With a Mission of working towards better diagnosis and treatment of FMD, our long-term vision is:
1. Researchers will identify a cause or causes and develop a cure and/or effective treatment(s) for FMD and FMD-related diseases.
2. Medical professionals and health care workers everywhere will be knowledgeable about FMD, resulting in rapid diagnosis and treatment, thereby minimizing FMD-related strokes, heart attacks, and complications.
3. FMD patients will live full healthy lives with minimal FMD-related complications.

1. To disseminate timely and accurate information about Fibromuscular Dysplasia to patients, family members, physicians, and other interested parties.
2. To provide emotional support to patients and family members through online social media and direct contact.
3. To encourage, advise, and establish standards for clinics specializing in the diagnosis and treatment of Fibromuscular Dysplasia.
4. To encourage and foster pertinent research on Fibromuscular Dysplasia.
5. To aid and encourage the formation of Support Groups, if and when feasible and to provide assistance and guidance to enhance their effectiveness and success.
6. To promote growth of Registry locations, collaboration between international registries, increased patient participation, and appropriate research use and publication of Registry data.

FMDSA has one (1) full-time and one (1) part-time employee, assisted by volunteers throughout the United States. FMDSA’s Board of Directors provides financial and strategic oversight and is comprised of 11 community members and business leaders, each of whom has a connection to Fibromuscular Dysplasia. FMDSA’s Medical Advisory Board (MAB) includes experts from the nation's leading medical and research institutions. This 9-member board advises and provides professional and technical expertise to the FMDSA Board of Directors and staff and makes recommendations regarding the FMDSA Grants Program.
Our Advisory Council provides additional leadership and support. The Board of Directors may by resolution designate one or more persons who are significantly interested in the welfare of those affected by Fibromuscular Dysplasia or their families to act as an Advisory Council to FMDSA. Members of this council may be persons of talent, special skills or experience, position, rank, influence, connection or demonstrated interest in FMDSA.
The Registry Network is a critical partnership with 17 leading medical centers treating FMD patients and collecting data for the Patient Registry in the U. S.
FMDSA coordinates an annual conference where patients, physicians, researchers, clinicians, and caregivers share information. We coordinate and facilitate research at our meetings, with blood draws, saliva collections, and patient studies. In addition, FMDSA inspires and facilitates International collaboration with International FMD organizations and research networks.

Our growth since the founding of FMDSA in 2003 has given our organization a worldwide presence and helped us to create awareness on a scale we never imagined. We have educated patients and healthcare providers globally. These efforts increased fibromuscular dysplasia awareness, collaboration, and research, and provided quicker diagnosis and treatment of rare disease events.

One of our proudest accomplishments to date has been establishment of the FMDSA funded FMD Patient Registry along with inspiring establishment of FMD Clinics throughout the United States where physicians collect and vet the data. The database will one day give us a full understanding of the disease and hopefully lead to the best treatment options and possibly a cure. To date, we have 17 active USA registry centers enrolling FMD patients and almost 3000 patients have participated. The Network teams have identified and are attempting to address the many issues specific to FMD and FMD-related diseases. There have been more than 40 medical posters, abstracts and manuscripts already published from the data in medical journals and presented at medical conferences

FMDSA fosters close working relationships with several international fibromuscular dysplasia organizations such as FMD-Be (Belgium), FMDAA (Australia), FMD groep nederland (Netherlands), UKFMD (United Kingdom) and mp.pl Szkolenia (Poland), and the Hospital European G Pompidou (HEDP, France). By uniting physicians with an interest in FMD throughout the world we assisted in the development of the International FMD Research Network. May 2014 was the first International FMD Research Network Symposium. The Network teams have since harmonized definitions and identified research priorities. Discussions have recently been held regarding international harmonization of registries.

FMDSA also works closely with related disease organizations. In the USA we work closely with Spontaneous Coronary Artery Dissection (SCAD) Alliance. FMDSA is recognized as a patient organization with NORD, National Organization of Rare Diseases and RareConnect.

Collaborating with our International FMD, rare disease and FMD-related disease colleagues is a strength we will leverage in the planning and execution of this project, in addition to sharing knowledge as gained.

What is next? Two new registry centers were added in 2019, and 425 new patients were added to the registry. We will continue our work in each category, especially to inspire additional FMD research. FMDSA will continue to identify unmet needs of our patient community and provide resources. We will continue to add Registry Centers, fund research, continue collaboration with related disease organizations, inspire and facilitate International collaboration, and provide patient and caregiver support.