Welcome to FMDSA
The Fibromuscular Dysplasia Society of America is a public health charity working towards better diagnosis and treatment of Fibromuscular Dysplasia (FMD). We do this by building awareness of FMD, funding research activities, providing patient support, and educating patients and the healthcare community. Learn more about our organization.
Latest News
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Dr Jeffrey Olin spoke at the ISET meeting in Miami on January 17th and the media was there paying attention, for highlights of Dr Olin's talk please click here. Thank you to all who donate, the registry and this data would not be possible without you.
Every year, Rare Disease Day has a specific theme worldwide. The theme of Rare Disease Day 2012 is solidarity and the official slogan is “Rare but Strong Together”. The message conveyed is that people active in the field of rare diseases are not alone and by working together we will all benefit. Although people with rare disorders face different medical obstacles, rare disease patients all over the world face the same type of medical, social and economic challenges related to their disorders. Together, in solidarity, the international rare disease community can build a better world for rare disease patients. Visit the Rare Disease Day website to learn more...click here
VASCULAR DISEASE FOUNDATION magazine, Winter 2012 Edition features Dr. Heather Gornik and our own Cheryl Bailey: Click here to read the article.
FMD CLEVELAND CLINIC WEB CHAT
Click Here to view the transcripts from the December 14TH FMD Cleveland Clinic web chat with Dr Heather Gornik and FMDSA Executive Director Pamela Mace.
PARIS UPDATE, by Dr PF Plouin.
The fifth HEGP (Hopital Europeen G Pompidou) meeting on FMD was held on October 21, 2011.
This annual meeting brings together physicians from Bordeaux, Caen , Clermont-Ferrand , Grenoble , Lille , Saint-Etienne , Marseille, Nancy and Toulouse participating in a national network on FMD.
The French network in coordinated in Paris by PF Plouin (Hypertension Unit, HEGP), E Mousseaux (Department of Radiology, HEGP), and E Touzé ( Stroke Center , Hopital Saint-Anne, Paris). A registry designed to document phenotypic and genetic traits in patients with renal and/or cervical artery FMD is used for a national cohort study evaluating the progression of FMD lesions and for pathophysiological and genetic studies.
J Olin and P Mace (USA), as well as P De Leeuw (The Netherlands), A Morganti ( Italy ), and A Persu ( Belgium ) were invited to participate in this year’s meeting in order to exchange information and data and to consider harmonizing the US and the French registries. This would be a first step for organizing cooperative or complementary studies in this rare condition.
Research update by Marja Wessels, who aslo attended and participated at the HEGP Meeting in Paris. Dr Marja Wessels (MD, PhD), clinical geneticist, Dr Rob Willemsen (PhD)
and Prof J Kros (MD, PhD), pathologist at the Erasmus Medical Center
Rotterdam, the Netherlands are continuing their work on histopathology
studies including immunostaining for TGFB pathway components to describe
in more detail characteristics of FMD pathology. We hope to finish these
studies by the end of this year.
FMDSA's Amazon Wish List: The Amazon Wish List allows organizations such as ours to defray the cost of many items we would otherwise need to purchase, and allows benefactors the opportunity to make a donation to FMDSA in the form of an item that we need in our office or for a conference. Simply go to http://www.amazon.com/gp/registry/registry.html?ie=UTF8&type=wishlist&id=1TGFVOJWASNCR, and search through our "wish list" and find an item that you would like to donate to FMDSA, it is that simple, add to your shopping cart, pay and Amazon ships it to FMDSA. Thank you in advance for helping support FMDSA via our Amazon.com wish list.
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