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.

February 18th, 2004  Just Published,  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.

7th FMDSA Annual Meeting in Cleveland Ohio May 17th, 2014

Registration and a welcome reception will be held the evening of May 16th and the Conference will start early Saturday morning on May 17th at the Wyndham Hotel, Cleveland Playhouse Square, in Cleveland, OH. Speakers will discuss the latest Fibromuscular Dysplasia patient registry finding's and other related topics. For a list of all confirmed speakers, and meeting registration, please click here

A few confirmed speakers and topics include 

Dr Jeffrey Olin, Mount Sinai, NY - "Update from the United States FMD Patient Registry"

Dr Heather Gornik, Cleveland Clinic, Ohio," International FMD Research Network Symposium Update "

Dr Stephain Debette, Paris, France " "FMD and Spontaneous Cervical Artery Dissection"

Professor Pierre-Francois Plouin, Paris, France "The French FMD Patient Registry Findings"'

                A Special Thank You to our 2014 Meeting Sponsors

 

                                          Platinum Sponsors

  

 

Silver Sponsors

 

                                                       

______________________________________________________________________

 

 

FMDSA is an Official Charity of the 2014 Cleveland Marathon

To be held the same weekend as the FMDSA Annual Meeting. 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 on Sunday May 18th, the day after after the annual meeting. 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 specific information on the race, click here.

For runners when you register here are the discount codes. FMDSA's 2014 charity code is "FDS4FULL" for the marathon, "FDS4HALF" for the half; and "FDS4TRACK" for the 10k and 5k. This code should be entered into the COUPON CODE section of the application form. We would like to encourage our runners to create a firstgiving fundraising page, it's fast, easy and secure. Create your page, click here.

__________________________________________________________________

We Support Rare Disease day!

 

 

How will you raise awareness of FMD on Rare Disease Day?

 

 

 

 

Visit NORD  and Global Genes to see how you can get involved.

 

 

 

 

 

___________________________________________________________________

America Heart Association Meeting, November 2013

A session on the Multiple Different Facets of Fibromuscular Dysplasia was just presented at the American Heart Association meeting in Dallas November 19th. Dr Heather Gornik presented "The FMD Registry: What We Have Learned"  click here, to view her presentation.

Also, presented by Rina Verma was " Understanding Patient Characteristics  and Clinical Significance of Headache in Patients With Fibromuscular Dysplasia" to view her abstract, please visit the AHA website. To view  information on speakers  and all FMD topics presented, please visit the AHA web site.

           




This organization has earned the GuideStar Exchange Seal, demonstrating its commitment to transparency. 

To revolutionize philanthropy by providing information that advances transparency, enables users to make better decisions, and encourages charitable giving.




Congratulations to medical advisory board member Dr Santhi Ganesh

Dr Ganesh, was one of 16 researchers to receive the Doris Duke award. She will receive $486,000 over 3 years for her research on the Genetics of Fibromuscular Dysplasia and Associated Aneurysmal Disease. To read the official press release please follow the link below.

http://www.ddcf.org/Global/MedicalResearch/2013 CSDA/CSDA 2013 Press Release final.pdf
 



This November an entire session of the AHA 2013 Scientific Sessions is being devoted to the multiple facets of FMD!


Information

Session Title: The Multiple Different Facets of FMD
Session Type: Cardiovascular Seminar
Session Number: CVS. 719
Session Date: Tuesday, November 19, 2013. 7:30-8:45am
Location: Room C146

Presentations

ModeratorBret N. Wiechmann, MD, Gainesville, FL

  • Carotid and Vertebral FMD: What Do We Know and Who Should Be Treated?  by Jeffrey W Olin, MD, New York, NY
  • Renal FMD. Diagnosis and Treatment  by Sanjay Misra, MD, Rochester, MN
  • The FMD Registry: What Have We Learned  by Heather Gornik, MD, Cleveland, OH
  • Peripheral and Mesenteric FMD  by Rahul S Patel, MD, Baltimore, MD



Save the date, May 17 2014 for the 7TH FMDSA Annual Meeting Cleveland, Ohio May 16th and 17th 2014

Check in and a welcome reception will be held the evening of May 16th and the Conference will start early morning on May 17th at the Wyndham Cleveland Playhouse Square Hotel in Cleveland, OH . Experts will discuss the latest Fibromuscular Dysplasia patient registry finding's and other related topics. After all speakers we will have a panel discussion where everyone will have the opportunity to ask questions. 

                                         

To book your hotel room please contact the Wyndham Hotel directly and mention FMDSA to receive the discounted hotel rate of $119.00 216-615-7500

We would like to thank all of our 2013 sponsors and extend a special thank you to our Platinum Meeting Sponsors

 

Silver Meeting Sponsors

                            

and David Slosky, MD Vanderbilt Heart and Vascular Institute

For updates on this years meeting, please view the annual meeting page check back often, as we will continue to add information to the web site.




March, 2013 NEW DATA FROM THE FMD REGISTRY RELEASED AT THE ACC:

 While FMD more commonly affects women, there are important sex–related differences in the clinical manifestations. Men with FMD have higher rates of arterial dissection and aneurysm and prevalence of renal artery involvement. Cerebrovascular signs and symptoms are more common in women. To view the abstract, click here

MORE NEW DATA FROM THE FMDSA FUNDED REGISTRY:

Roughly 1 in 5 FMD patients reported an aneurysm. Male FMD patients were more likely to develop an aneurysm than female FMD patients. FMD patients with aneurysms had earlier onset of hypertension, higher prevalence of subarachnoid hemorrhage, and were more likely to have FMD identified in multiple vascular beds, especially mesenteric and intracranial carotid artery involvement. Further research is needed to determine the cause of arterial aneurysms in FMD and more effectively recognize FMD patients at risk for aneurysm formation. To view the abstract, click here  Presenting the posters are Dr Esther Kim, Dr Heather Gornik and Jordan Gavin.

       

 



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 Circle of Friends

To help fund the United States Registry for Fibromuscular Dysplasia, we have created the

FMDSA "Circle of Friends". The FMDSA Circle of Friends is a group of committed benefactors with an interest in supporting the patient registry. By making a gift or pledge of $5,000 or more annually, you can help FMDSA ensure that the registry continues. Without the registry, we are just a group of patients. With the registry, we are a voice that has gotten the attention of the medical community.

You can be a part of something great while making a difference in the lives of patients, not only today, but for generations to come. For many of our members, their daily activities of living are affected and they do not have the ability or means to give. It takes special individuals like you to help make a difference.

FMDSA has made substantial progress in raising awareness of this disease and educating medical professionals over the last decade as evidenced by the increasing number of patients that are newly diagnosed. We need your help to continue to be a voice! To learn more about the FMDSA Circle of Friends, please contact Jodi Roth at jodi.roth@fmdsa.org




The Memsaic FMD Wall

Post your picture or a message for other FMD Patients to see. The bricks are only $15 each and you can buy more than one, only 210 bricks will be sold. Help us to build a Beautiful FMD Wall, while supporting our programs. It's fast and easy.

To view our wall, please click here




Other News Updates

Cath Lab Digest - Fibromuscular Dysplasia: The Registry and Results, interview with FMDSA Executive Director, Pam Mace can be found here.

Results published in Circulation May 2102, from the United States FMD Patient Registry on the first 447 patients who participated, click here  This is the most up to date information to be published on fibromuscular dysplasia.

For a copy of Circulation's Cardiology Patient Page  on FMD published May, 2012 click here

Join us on the FMDSA Facebook , click here also join our Inspire Support Community




Dr Jeffrey Olin spoke at the ISET meeting in Miami on January 17th and the media was there paying attention,  for highlights of Dr Olin's talk please click here.  Thank you to all who donate, the registry and this data would not be possible without you. 




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 search through our "wish list" and find an item that you would like to donate to FMDSA, it is that simple, add to your shopping cart, pay and Amazon ships it 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.

 

All News & Events