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. 

Thank you to everyone who attended THE 10TH ANNUAL FMDSA MEETING in Cleveland, Ohio, and made it such a success!

 

For those of you unable to attend, here are brief videos of some topics covered during the meeting:

Fibromuscular Dysplasia in Children: Dr Kevin Meyers Explains

Spontaneous Coronary Artery Dissection (SCAD) Explained: Dr. Esther Kim

Is Fibromuscular Dysplasia a Rare Disease? Dr. Esther Kim

The Genetics of Fibromuscular Dysplasia: Dr. Nabila Bouatia-Naji 

Dr. Jason Kovacic Explains the Define-FMD Study

A FMD Diagnosis Is Often Made While Looking For Something Else: Cyndy Speck

Thanks to all the speakers and sponsers as well!

Dr Jeffrey - Olin Mt Sinai, New York, NY

Dr Heather Gornik- Cleveland Clinic, Cleveland, Ohio

Dr Jason Kovacis - Mt Sinai, New York, NY

Dr Esther Kim - Vanderbilt University Medical Center, Nashville, TN

Dr Nabilia Bouatia- Naji - Paris, France

Dr Alexandre Persu - Brussels, Belgium

Emma Greewood - Whooshers.com, New York

Dr MayaSerhal - Cleveland Clinic, Cleveland, Ohio

Dr Alex Milspaw - Pennsylvania

Dr Mark Stillman - Cleveland, Clinic

 Our 2017 Meeting Sponsors        

                         

 

 

 

 

                       

Topics covered during the meeting included:

“FMD Basics”

"Sudden Coronary Artery Dissection and FMD"

"Treatment of Aneurysms and Dissections in Patients with FMD"

"Management of Hypertension in FMD"

"Headache and FMD

"Pulsatile Tinnitus"

Mindfulness- Relaxation and Stress Management

"FMD as a Complex Genetic Disease"

Mt Sinai "Define - FMD Study Update

Update on the 2nd International Fibromuscular Dysplasia Research Network/SCAD Symposium

"The European Initiative"

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FMDSA is an Official Charity of the Cleveland Marathon.  Please consider running as part of our team in 2018.

 

 

We are putting together teams of runners and walkers to participate in the marathon, half marathon, 10K, 5K and kids run. FMDSA is also looking for 25 volunteers to work at a water station for the 2018 marathon. All 25 people will stay together and we can be as creative as we would like with our water station. For more information please contact volunteer Karen Prcela at karen.prcela@fmdsa.org,  

For updates on dates and information on the 2018 marathon, click hereFor runners the group code for all races is: RUN4FMDSAThis code should be entered into the COUPON CODE section of the application form. We would like to encourage our runners to support or create a  fundraising page; it's fast, easy and secure. To create your page, click here

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Congratulations to doctors Heather Gornik and Jeffrey Olin who Co-Chaired the First International Fibromuscular Dysplasia Network Symposium 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 working groups, please follow this link.

 



Fibromuscular Dysplasia: State of the Science and Critical Unanswered Questions: A Scientific Statement from the American Heart Association.

 

The authors did a great job and covered all areas of FMD including history of the disease, diagnosis, imaging, treatment and research. We would like to thank everyone involved, especially Dr Jeffrey Olin and Dr Heather Gornik for their dedication to FMD patients and FMDSA.  The paper is free and can be found on Circulation, Journal of the American Heart Association.

 

           

 

 

        

 

 


Supporting the Rare Disease Community

 

 FMDSA is a member organization of NORD. The National Organization for Rare Diseases and also a partner of the RARE Project, both organizations represent rare diseases from all over the world.

 

With Support From...


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.  Click here to register for amazon smile and to search through our "wish list" and find an item that you would like to donate to FMDSA. It is that simple; just add to your shopping cart, pay, and Amazon ship your donated item to FMDSA.  Thank you in advance for helping support FMDSA via our Amazon.com wish list. Please note that it has come to our attention that Amazon is not sending a gift notice with your orders so for now unless you contact us directly we have no way of knowing who sent the items. We are working with Amazon to resolve this issue.  Thank you for your donations!

 

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