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.

 

SAVE THE DATE, MAY 16TH 2015 FOR THE 8TH ANNUAL FMDSA MEETING

In Cleveland, Ohio at the Wyndham Hotel in Downtown Cleveland. More details coming soon!

To book your hotel please contact the hotel directly and mention FMDSA to receive the discounted hotel rate of $115.00 216-615-7500 We are so looking forward to seeing you.

 

 

Congratulations to doctors Heather Gornik and Jeffrey Olin who Co-Chaired the First International Fibromuscular Dysplasia Network Symposium on May 15th and 16th, 2014 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 Networking groups

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February 18th, 2014  

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.

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FMDSA is a Charity of the 2015 Cleveland Marathon

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 17th. 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 the coupon code for all races is: RUN4FMDSA. 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. To create your page, click here.

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We Support Rare Disease day! 2015

 

 

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

 

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American 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, TX on November 19th. Dr. Heather Gornik presented "The FMD Registry: What We Have Learned."  To view her presentation, click here.

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 Clinical Scientist Development 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
 


 

 

                                         

 

       

 



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 2012, from the United States FMD Patient Registry on the first 447 patients who participated.  To view the article, 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 Page, and click here to also join our Inspire Support Community.




Dr. Jeffrey Olin spoke at the ISET meeting in Miami on January 17th. 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; 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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