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. 

Upcoming Events


Registration for the 2018 Cleveland Marathon is NOW OPEN

FMDSA is an official sponsor of the 2018 Cleveland Marathon. You can help raise awareness for FMD by running or volunteering! The marathon will be held on May 20th, 2018.

Registration opens August 1st. For updates, information and to register for the 2018 marathon, click here

October 21st, 2017 FMD Awareness Fundraiser in Milwaukee.

To be held at the Aloft Hotel in Milwaukee. Please contact Erika at erikamarish@gmail.com to register for the event

For more information click here.


November 4th 2017: Lisa's Light, Race For Your Reason

Lisa’s Light. “Lisa was a beautiful woman who lived her life helping others. She volunteered at charity fundraisers and unexpectedly suffered an aneurysm walking out of church surrounded by her family on Christmas Day. Last year we had our first event in her name, Lisa’s Light which raised $8,000 for Fibromuscular Dysplasia Society of America in her memory. This year we keep Lisa’s Light shining on with all of her Hartford family and supporters as a part of Race for Your Reason. Brain Aneurysms are so unpredictable and we need so much more dedication to research and funding.”

At this unique race, participants are able to choose which of the highlighted charities they would like to race for, split their fee amongst the 5 charities. Participant registration fees and any donation can be applied to their choice!

Please support Lisa’s Light and help her family and friends by sharing this post. If your able to attend the event please select the Fibromuscular Dysplasia Society as your Reason to Race.

We send our deepest condolences to Lisa’s family and friends.

To register for this event click here.


FMDSA Updates


Loss-of-Function in YY1AP1 Gene Discovered to Display FMD Characteristics.

Dr. Milewicz and a team of researchers at The University of Texas Health Science Center have discovered a mutated gene linked to phenotypic characteristics of FMD. The loss-of-function mutation in the YY1AP1 gene was found to be present in both FMD and Grange Syndrome patients. This mutation causes a decrease in the proliferation (multiplying or reproducing) and differentiating (becoming a specific "type" of cell) of smooth muscle cells in arteries. Additional studies are needed to see exactly how this causes or influences the expression of FMD and Grange Syndrome phenotypes.

For the full article Click Here.


Emory Healthcare Fibromuscular Dysplasia Symposium. September 30th, 2017

Great turnout at Emory University Hospital this past weekend! It was another great opportunity for patients, family and doctors to connect and get to know one another better. During the meeting information about FMD was presented to help everyone gain a better understanding about the disease that influences their lives.

Here are some of the topics covered during the meeting:

Dr. Brian Wells - Basics of FMD, cognitive function and FMD along with a case study

Dr. Yazan Duwayri - Management of visceral aneurysms in FMD

Natalie Sterrett - Update on the FMD registry

Dr. Chandan Devireddy - Percutaneous intervention for renal FMD

Dr. Gina Lundberg - SCAD and FMD: Reviewed two separate studies done by Dr. Sharonne Hayes from Mayo Clinic and Dr. Jacqueline Saw from Vancouver General Hospital

Dr. Sabrina Kennedy - Pediatric FMD

Pam Mace - FMD from a patients' perspective

Dr. Janice Lea - Renal FMD and hypertension

Dr. Fadi Nahab - Stroke and intracranial aneurysms in FMD

Roshan Modi - Headaches in FMD

Dr. Diogo Haussen - Carotid dissection and FMD

Here are a few photos from the symposium


FMDSA is an Official Charity of the Cleveland Marathon.  Please consider running as part of our team in 2018. Registration opens August 1st!


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 Iva Prcela at iva.prcela@fmdsa.org  

Registration opens August 1st. For updates, information and to register for the 2018 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



Congratulations to doctors Heather Gornik, Jeffrey Olin and Esther Kim who Co-Chaired the Second International Fibromuscular Dysplasia Network Symposium in Cleveland Ohio on May 18th-19th 2017. 











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 click here.


We had a wonderful 10th Annual Meeting on Fibromuscular Dysplasia held in Cleveland, Ohio.

The 2017, 10th annual meeting was a great time for patients, doctors, family and friends of the FMD community to gather and discuss pressing issues within FMD and also create lifelong friendships. Some of the topics cover during the meeting included: FMD basics, sudden coronary artery dissection and FMD, treatment of aneurysms and dissections in patients with FMD, pulsatile tinnitus along with many more.

For more information and links to topics covered click here.

We hope to see you at the 2018, 11th Annual Meeting on Fibromuscular Dysplasia held on May 19th. For more information on the 11th Annual Meeting and how to register click here.


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!


All News & Events