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.
Use GoodSearch to Fundraise for FMDSA
FMDSA is now a registered charity with GoodSearch, a search engine which allows you to raise a penny for each search through their Yahoo! powered search engine. By creating a Dailygood profile on the GoodSearch webpage here and selecting the Fibromuscular Dysplasia Society of America as your charity of choice, you can begin raising money for the FMDSA every time you search the internet. You can also use your Facebook, Google+, or Yahoo! account to sign up for a Dailygood profile. With this profile, you can also use GoodShop, which partners with popular retailers to donate a portion of each purchase to charity. Both of these options are easy and rewarding ways to raise money for the FMDSA.
What's New with Fibromuscular Dysplasia - [Video Chat]
Don't miss this opportunity to chat with an expert in the diagnosis and treatment of FMD, Heather Gornik, MD, and Pamela Mace, RN, Executive Director of the FMDSA. They will also be discussing the FMDSA Annual Meeting and the first ever International Fibromuscular Dysplasia Research Network Symposium held May 15th and 16th in Cleveland, Ohio.
Date: Thursday, June 19, 2014 Time: 12:00 PM (EST). Please register in advance to participate
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
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.
A Special Thank You to our 2014 Meeting Sponsors
FMDSA is an Official Charity of the 2015 Cleveland Marathon
RUN4FMDSA. 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.
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.
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.
This November an entire session of the AHA 2013 Scientific Sessions is being devoted to the multiple facets of FMD!
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
Moderator: Bret 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 in the early morning on May 17th at the Wyndham Cleveland Playhouse Square Hotel in Cleveland, OH . Experts will discuss the latest Fibromuscular Dysplasia patient registry findings and other related topics. After all speakers have presented, 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
Platinum 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 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 firstname.lastname@example.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.
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!