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


 

July 22, 2017 - Kentucky patient group get together in Shelbyville. 

 

Please contact Rosie at rosiemik@aol.com for more information on the time and location.

 

August 1, 2017 - Registration for the 2018 Cleveland Marathon Opens (Discounted Early bird Registration from August 1st until August 11th)

 

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. Register early to save!

Registration opens August 1st. Discounted early registration is available from August 1st until August 11th, then rates will increase! The early registration group code for all races is: EARLYBIRDFMDSA10. 

For updates, information and to register for the 2018 marathon, click here

 

August 26, 2017 - Spontaneous Coronary Artery Dissection (SCAD) Patient Symposium

By Vanderbilt Heart and Vascular Institute

The Vanderbilt SCAD Patient Symposium is a one day educational and social event for SCAD patients and their family members. Led by Dr. Esther S.H. Kim, a mix of expert physician presentations and patient panel discussions will explore spontaneous coronary artery dissection (SCAD) and related topics with ample time devoted to questions and discussion. The event will also be an opportunity for patients to meet others who have suffered a SCAD event and hear patient stories about life after SCAD, both struggles and triumphs.

Join us on Saturday, August 26, 2017 at Nashville Marriott at Vanderbilt University - Parthenon Ballroom 2555 West End Avenue, Nashville, TN 37203, from 8:00 am to 4:00 pm (CDT). 

For more information click here.

 

September 30, 2017 - Emory Healthcare Fibromuscular Dysplasia Symposium.    

This free program, led by Bryan Wells, MD, will provide an overview of fibromuscular dysplasia (FMD) and feature presentations by Emory's multidisciplinary FMD team, including experts in cardiology, vascular surgery, neurology, nephrology, pediatrics, and interventional radiology. The event is open to FMD patients and their families, friends, and health care providers.

For more information click here.

 

 

 

FMDSA Updates


 

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:

Thanks to all the speakers and sponsors as well!

Our 2017 Meeting Speakers: 

  • Dr. Jeffrey Olin - Mt Sinai, New York, NY
  • Dr. Heather Gornik - Cleveland Clinic, 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 Greenwood - Whooshers.com, New York
  • Dr. Maya Serhal - Cleveland Clinic, Ohio
  • Dr. Alex Milspaw - Pennsylvania
  • Dr. Mark Stillman - Cleveland Clinic, Ohio

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

 

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, information and to register for the 2018 marathon, click here

Registration opens August 1st. Discounted early registration is available from August 1st until August 11th, then rates will increase! The early registration group code for all races is: EARLYBIRDFMDSA10This 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

                                                  


 

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 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!

 

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