News and Updates                                   

We are excited to announce the International Symposium, "Revisiting Fibromuscular Dysplasia & Related Vascular Diseases." Feb, 2018 Belgium

International collaborative efforts are underway to unravel the genetics, pathophysiology and natural history of FMD.  Symposium is being held February 22nd -24th, 2018 Belgium Royal Academy of Medicine, Brussels. Hosted by C0-Presidents Prof. Alexandre Persu, Brussels Belgium and Prof. Heather Gornik, United States of America. To view the final program, click here


New FMD Clinics

 University of Wisconsin Fibromuscular Dysplasia and  Arteriopathy Program, Dr. Kevin P. Cohoon. (Not yet  part of the USFMD Registry)

 Another connection was made with the University of Wisconsin  Fibromuscular Dysplasia and Arteriopathy Program! Located in Madison  Wisconsin, this is yet another location for patients to receive exceptional  care close to home. Dr. Kevin P. Cohoon, who is part of the UW Cardiovascular Medicine Department, specializes in both FMD and SCAD and is hoping to join our battle against FMD through research. 

"The University of Wisconsin Fibromuscular Dysplasia (FMD) and/or Spontaneous Coronary Artery Dissection (SCAD) Program is part of an innovative multidisciplinary collaborative clinical practice and research program that provides specialized care for patients with FMD and/or SCAD. Cardiovascular specialists collaborate with vascular medicine, vascular surgery, nephrology, neurology, neurosurgery, radiologists, and medical geneticists to provide care dedicated to advance the understanding of the causes and risk factors for FMD and/or SCAD to develop solutions for optimal diagnosis, treating and helping patients manage FMD and/or SCAD. For more information, visit [our website here] or call 800-438-3102 to schedule an appointment with our specialists."

_____________________________________________________________________

Dr. Kambiz Zorriasateyn of NorthShore University Health System is a specialist in the areas of FMD and SCAD and would love to see you! (Not yet part of the USFMD Registry)

To find out more click on one of the following links!

About Dr. Kambiz Zorriasateyn.

About the clinic.

Request an appointment.

 


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: 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 intercranial aneurysms in FMD

Roshan Modi - Headaches in FMD

Dr. Diogo Haussen - Carotid dissection and FMD


Emory Healthcare Fibromuscular Dysplasia Symposium 2017 Photos


The 2nd International FMD Research Network and SCAD Symposium 2017

The 2nd International FMD Research Network and SCAD Symposium took place in Cleveland, Ohio on May 18th-19th. The meeting was co-chaired by Dr. Heather Gornik, Dr. Jeffrey Olin and Dr. Esther Kim. FMDSA was very excited and proud to be a sponsor of the symposium which was very well attended.

Over 100 clinicians and researchers worldwide from the United States, Canada and Europe came together to discuss and update the state of the clinical science, scientific strategic planning and have in person conversation and collaboration in regard to FMD.

Four working groups were created and a working group charge was identified for each group.

The groups and charge included:

1) Genetics/Reassessing the FMD Phenotype.
Working group charge: To consider the implications of broadening definitions used for assessment of the "FMD phenotype" and to discuss incorporation of patients with cervical artery dissection and SCAD into ongoing genetic research collaboration.

2) Exercise and Activity After Spontaneous Coronary Artery Dissection.
Working group charge: To strategize methodology for development of an expert opinion consensus on post SCAD exercise and activity for medical professionals and patients.

3) Maximizing Collaboration of International Registries.
Working group charge: To discuss, identify and strategize opportunities for collaboration of the United Sates Registry for FMD and the European FMD Registry.

4) Patient Advocacy Working Group.
Working group charge: To identify the unmet needs of the US and international FMD and SCAD patients and to determine potential mechanisms to address these needs.

Stay tuned for an update!

_____________________________________________________________________

FMDSA Annual Meeting Photos 2017


 FMDSA is an Official Charity of the 2018 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 21st. 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

___________________________________________________

FMD Awareness: May is now officially recognized as Fibromuscular Dysplasia Month in the State of Ohio! Thanks to the efforts of Nan Baker, House Bill 434 passed into law designating the month. 

 

This designation is a major accomplishment not only for all of you who fight to raise awareness for this disease, but everyone who struggles with FMD on a daily basis.  Please contact Pam Mace to learn more about the process and how you can make this happen in your state. Pictured are Ohio State Representative, Nan Baker and Cliff Rosenberger (Ohio Speaker of the House)

 

 



1st International Fibromuscular Dysplasia Research Network Symposium - May 15th-16th, Cleveland, OH

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.  Topics covered ranged from advances in imaging and diagnosis to an evaluation of connective tissue findings in FMD patients.  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).  The meeting was a great success and plans were developed to continue research network symposia in the following years. To view all abstracts presented and learn more about the Symposium and working groups, click here.

Members of all Symposium Working Groups are shown above.


 


Fibromuscular Dysplasia (FMD) Registry in France

We seek partnership with patient organizations. To my knowledge however, there exists no FMD patient association in Europe.  This is why I am keen to have contacts with patients who could be interested in a European FMD initiative and would eventually attend our forthcoming FMD meeting (November 8th in Paris).

Written by Pr. Pierre-François Plouin, June 2013

ARCADIA (Assessment of Renal and Cervical Artery DysplasIA) is a French registry designed to document phenotypic and genetic traits in patients with renal and/or cervical artery fibromuscular dysplasia (FMD). PROFILE (PROgression of FIbromuscular LEsions) is a cohort study evaluating the progression of FMD lesions. These studies are coordinated by the hypertension unit and the reference center for rare vascular diseases at Georges-Pompidou European Hospital located in Paris, France. (http://www.maladiesvasculairesrares.com).

Objectives

The main objective is to create a National FMD registry to collect standardized information from consenting patients diagnosed with the condition in 16 participating centers. The first application is the assessment of the frequency of multi-site FMD, i.e. the frequency of cervical artery FMD in patients presenting with renal artery FMD and vice-versa (ARCADIA and PROFILE). The second application is the assessment of the incidence and risk factors for progression of FMD lesions (PROFILE). The third application is case-control study to identify susceptibility genes for FMD, including genes that may influence disease progression or be associated with complications.

Overall design

Patients are eligible if (a) they have renal or cervical artery FMD with either the string-of-beads sign (‘medial’ or multifocal FMD) or focal/tubular lesions (focal FMD) at CT-angiography, MR-angiography, or intra-arterial angiography; (b) they give informed consent to provide leukocyte DNA for analysis and for the collection of pertinent bioclinical and morphologic annotations. In addition to DNA sampling and collection of cross-sectional information, patients who are available and willing to undergo a 3-year follow-up are offered the possibility to enroll in the PROFILE cohort. Phenotypic assessment, follow-up and indications for revascularization comply with current recommendations and best clinical practice. Patient participation lasts one day for ARCADIA, and 3 years for PROFILE.

Expected results

The natural history of the condition will be better characterized, allowing development of optimal strategies for investigating, monitoring, following-up and treating patients with FMD. The biological and genetic study should help improve understanding of the pathophysiology and genetic determinism of this rare disease and open new possibilities for therapy.

 


International Collaborations -

Paris, France

 

 

Cleveland, Ohio

 

 

 

 

Brussels, Belgium

 

 

______________________________________________________________________

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


 


 

Patients United 2017

 

It is that time of year again when we are looking forward to our spring fundraiser "Patients United"
To date we have had 10 States participate in this event. Our hope is to one day have all 50 States Participate! The event is held during the months of March, April and May.
Individuals can have an event or groups can work on one together. Events have been large in size
or small. Whatever the member/members decide. Some past events have been

Wine Tasting Party
Bowling Party
Napa Cottage Stay
Jeans Day at Work
Bake Sales
Raffle a FMDSA Bracelet
Bicycle Race
Marathon
First Giving Fundraising Page
As you can see there are lots of ways to fundraise. There are also many great fundraising ideas to be found on the internet. Small or big every dollar raised for FMDSA helps us to continue to support the FMD Registry funded solely by FMDSA.
If you are a group leader or member of a FMDSA support group perhaps your group might want to jointly work on a fundraiser. Or if you are an individual member and have not yet met others with FMD this might be a great way to reach out to someone and work on a fundraiser together. 
Should you like to participate in Patients United or have any questions please contact Maureen Womack at maureen.womack@fmdsa.org.  Let's make this the most successful Fundraising year yet!


 People Have the Power. "Fibromuscular Dysplasia Complications" 2016

Written by doctors Joshua Beckman and Mark Creager. The article was published in the Journal of the American College of Cardiology. Doctors Beckman and Creager use our patient registry as an excellant example of the collaboration between patients and physicians. "In our opinion, this model provides important opportunities to acquire new information and enhance understaning of poorly appreciated diseases."

_____________________________________________________________________

“Rare” Diseases: Motivated Patients Make the Difference.  

"Dr. Seuss once wrote, "Unless someone like you cares a whole awful lot, nothing is going to get better. It's not". This article focuses on the success of FMDSA and our motivated patient group. Authored by, Kuck, Heidt, Kline-Rogers and published in the E. International  Journal of Cardiology.  2016;208:95-96


 

Back to Top