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. 


FMDSA is recommending that everyone follow the guidelines set by the Center for Disease Control (CDC) www.cdc.gov. If you have specific questions regarding your persoanl medical history, please contact your health care provider. 

 A message  from Dr. Heather Gornik and Dr. Jeffrey Olin regarding the coronavirus and questions that we have received. Please check with your physician to discuss your specific medical history and how the coronavirus might affect you.

They have also addressed patients receiving the COVID-19 vaccines.






We are honored to share our Guide Star Platinum Seal of Transparency. 


The 2021 Annual Meeting on Fibromuscular Dysplasia has been scheduled for October 16th.  We are hopeful that we will be able to have an in person meeting.

Stay tuned for more information. If you have specific questions please contact Pam Mace at pam.mace@fmdsa.org.

Each year we gather the leading specialists to come and speak about FMD. This is one of the most beneficial meetings anyone interested in learning more about FMD can attend. During the meeting you will learn about the most recent developments in FMD management along with hearing specialist discuss their most recent understandings of the disease.

Not only will you hear from specialists, but you will also be able to speak with them directly in open panel discussions. These open panel discussions give you the opportunity to ask specialists anything that may not have been answered during the presentations. 

You will also have the opportunity to meet others with FMD. If you or a loved one has FMD, it can be hard for others to understand things you may be dealing with in relation to the disease. Being able to connect with others who can relate, can help with your ability to cope with FMD by know you're not the only one and others may provide you with their tips and trick for dealing with certain issues (always consult with your physician prior to applying any of the recommendations). 

The meeting will be held on Saturday October 16th in Cleveland, Ohio (8am-4pm) and there will be a meet and greet the evening of Friday October 15th.

Both events take place at the Crown Plaza Hotel in downtown Cleveland, Ohio ( 216-615-7500 mention FMDSA). Stay tuned for more details.

Topics inlude:

  • What is Fibromuscular Dysplasia?
  • Treatment of Cervical Artery Dissection and Intracranial Aneurysms
  • Identifying the Patient Likely to Benefit from Renal Artery Angioplasty
  • Pulsatile Tinnitus and Current Treatment Options
  • Spontaneous Coronary Artery Dissection: treatment, exercise and the iSCAD Registry
  • FMD and SCAD research update
  • United States FMD Registry: what has it taught us?



Due to the coronavirus the Martahon is now a virtual event. Please visit the Marathon Website for more information.

FMDSA is an Official Charity of the Cleveland Marathon.  Please consider running as part of our team in 2020.

Please be sure to join our team:RUN4FMDSA.


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 2019 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 @ karen.prcela@fmdsa.org  

For updates, information and to register for the 2020 Cleveland Marathon, click here

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


"Revisiting Fibromuscular Dysplasia & Related Vascular Diseases." Feb 2018 Belgium

International collaborative efforts are utilized to unravel the genetics, pathophysiology and natural history of FMD.  The symposium was held February 22nd -24th, 2018 at The Belgium Royal Academy of Medicine, Brussels. Hosted by C0-Presidents Prof. Alexandre Persu, Brussels Belgium and Prof. Heather Gornik, United States of America. To view the final program, click here.


Rare Advocacy Partners

FMDSA is a member organization of NORD, the National Organization for Rare Diseases and also a partner of the RARE Project, and Rare Foundation Alliance. These organizations represent rare disease patients 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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