Educating physicians and health care providers about FMD is a primary goal of the FMDSA. Please also review the Research Network Section for up to date data being published from the FMD Patient Registry.
The Second Belgium Meeting on Fibromuscular Dysplasia, December, 2016
The meeting on FMD was be hosted by Prof. Alexandre Persu and Prof. Patricia Van der Niepen at the Auditoire Maisin in Brussels. It's a national meeting with a European and international faculty with topics aimed at updating and educating medical professionals on relevant topics related to FMD. The meeting also addreseds important practical questions and provided the opportunity to present the BEL-FMD Project, a Belgium multicentric cohort within a European initiative.
Congratulations to Drs. Heather Gornik and Jeffrey Olin, who Co-Chaired the First International Fibromuscular Dysplasia Network Symposium on May, 2014 in Cleveland, Ohio.
This meeting gathered key researchers and clinical thought leaders in the field of FMD for a state-of-the-art review of the existing knowledge base and current research activities related to FMD in the United States and abroad. A large proportion of the meeting was focused on the creation of an FMD research network, comprised of four focused working groups on various aspects of FMD research (epidemiology, genetics, research registries, and imaging and clinical therapeutics). To view all abstracts presented and learn more about the Symposium and Networking groups
Paris update, by Dr PF Plouin. The HEGP (Hopital Europeen G Pompidou) meeting on FMD. 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.
Listen to Dr. Olin's interview about FMD from the series "Heart Matters" on ReachMD, the channel for medical professionals.
Orphanet is led by a European consortium of around 40 countries, coordinated by the French team. National teams are responsible for the collection of information on specialised clinics, medical laboratories, ongoing research and patient organisations in their country. For information on research, clinical trials and resources in other countries, please click here
Please note: for patients reading this information - the information provided in this link is designed to support, not replace, the relationship that exists between you and your physician.