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 Hopital Europeen G Pompidou, Paris, France (http://www.maladiesvasculairesrares.com).
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.
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.
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.
University of Kansas Fibromuscular Dysplasia Center
Physicians and staff who have a dedicated interest and expertise in the management of FMD staff the KU FMD clinic. This clinic is led by Kamal Gupta, MD who is a vascular medicine specialist with board certification in Vascular Medicine and Interventional Cardiology. The clinic has close affiliations with specialists in kidney disease, neurology, vascular surgery and others so that our patients with FMD can be seen by different specialists as needed. The KU complex hypertension center is also housed in the same area as the FMD Clinic and led by Kamal Gupta, MD and Sri Yarlagadda, MD (Kidney Disease specialist). Since many FMD patients also have difficultly controlling their hypertension, this facility is of significant benefit to our patients.
At the KU FMD clinic we understand that though FMD can be managed successfully, many patients need long-term monitoring and guidance. As the only dedicated FMD center in the region we are fortunate to look after patients referred from a multi-state area. We understand that patients travel long distances at considerable inconvenience to see us and thus we do all we can to make the visit most useful and time efficient. Prior to your visit our FMD nursing staff will call and get detailed information about your history and any tests that may have been done so that we can have them for review prior to your visit and also schedule the tests that you may need so that all may be done preferably the same day. Our dedicated staff strives to meet the needs and expectations of our patients.
For more information or to schedule an appointment please visit us at: http://www.kumed.com/heart-care/diseases-and-treatments/vascular-disease/fibromuscular-dysplasia or to schedule an appointment please call 913 588 9700.
March, 2013 NEW DATA FROM THE REGISTRY RELEASED TODAY 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 poster, click here Presenting the posters are Dr Esther Kim, Dr Heather Gornik and Jordan Gavin.
FMDSA has earned the GuideStar Exchange Seal, demonstrating its commitment to transparency.
Patients United 2013
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. What ever the member/members decide. Some past events have been
Wine Tasting Party
Napa Cottage Stay
Jeans Day at Work
Raffle a FMDSA Bracelet
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 soley 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 firstname.lastname@example.org. Let's make this the most successful Fundraising year yet!
FMDSA is an Official Charity of the 2013 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 19th, 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 email@example.com, For specific information on the race, click here
For runners when you register here are the discount codes. FMDSA's 2013 charity code is "FDS3FULL" for the marathon, "FDS3HALF" for the half; and "FDS3TRACK" for the 10k and 5k. This code should be entered into the COUPON CODE section of the application form.
Rare Disease Day, February 28th, 2013
Every year, Rare Disease Day has a specific theme worldwide. Although people with rare disorders face different medical obstacles, rare disease patients all over the world face the same type of medical, social and economic challenges related to their disorders. Together, in solidarity, the international rare disease community can build a better world for rare disease patients. Visit the Rare Disease Day website to learn more,and see how you can get involved click here.
2012. For the most recent data from the FMDSA funded Patient Registry, abstracts are posted on the JACC web site, please click here
FMD Medical Information In the News. This has started out to be a great year and for all of you that have participated in the registry and donated to FMDSA to support the Patient Registry the impact we are having is obvious!
Fibromuscular Dysplasia Registry Results presented at the ISET Meeting in Miami by Dr Jeffrey Olin http://www.cxvascular.com/in-latest-news/interventional-news---latest-news/fibromuscular-dysplasia-registry-results-presented-at-iset
FMD makes the Cover of Endovascular Today. Thank you Dr Olin and colleagues.!http://bmctoday.net/evtoday/2012/02/article.asp?f=renal-artery-fibromuscular-dysplasia-update
It's amazing just how frequently FMD is making headlines and is in the News.
Images and Case Reports, Thank you Dr Gornik and Colleagues http://circinterventions.ahajournals.org/content/5/1/e9.extract?sid=02cce32e-cd18-46e9-a979-4818b45e2fc4
Dr Jackie Saw on Coronary Dissection and FMD
Hear Dr Saw discussing the data., she is introduced about a minute into the Pod Cast.http://www.cbc.ca/earlyedition/podcast/2012/02/24/new-heart-risk-bctf-negotiations-transit-funding/
The National Stroke Association features Stacey an FMD patient with a very inspiring story. http://www.stroke.org/site/News2?news_iv_ctrl=-1&id=14428
The TV Show "House" did a segment in late February and fibromuscular dysplasia was mentioned as a possible diagnosis. One of the writes for the show is Lisa Sanders who also writes for the New York Times. Recently Lisa also featured an fmd patients story in the New York Times. http://www.nytimes.com/interactive/2012/01/20/magazine/diagnosis-head-full-of-pain.html?n=Top/Features/Magazine/Columns/Diagnosis
NBC-40 (South Jersey)...our own Cheryl Bailey spreads awareness on Health Update
To watch the full interview, click here, select FMDSA TV Interview on left under Links.
Vascular Disease Foundation, Winter 2012 magazine article with Dr. Heather Gornik and our own Cheryl Bailey
Click here to read the article.
The Second Annual Fundraising Dinner to benefit Stanley’s Kids and The FMDSA. Friday, January 20, 2012 at 7:30pm at Echo LakeCountry Club,515 Springfield Avenue, Westfield, NJ. Dinner,Wine & Beer and DJ. There will also be a SilentAuction and Raffle Baskets; Cash or checks kindly accepted $75 per person Friends and family welcome!! RSVP by January 10th
For more information please contact Tracey Toto at firstname.lastname@example.org
You can send a check, payable to: 2012 Fundraiser Account - Stanley’sKids/FMDSA
c/o Tracey Toto, 30 Greaves Place, Cranford, NJ 07016
If you are unable to attend but would like to donate, please follow the attached links to donate …..
Stanley’s Kids-> http://www.med.umich.edu/mott/help/gift_family_stanley.html
All donations are tax deductible.
A note from Tracey
As most of you know,our daughter Alex has a disease called fibromsucular dysplasia. Fibromuscular Dysplasia (FMD) is a disease that causes narrowing, or stenosis, in one or more arteries in the body. FMD is mostcommonly found in the arteries leading to the kidneys (renal arteries), thecarotid arteries, and thearteries in the abdomen and extremities. The cause of FMD is not yet known
Stanley’s Kids is a fund that was started that is maintained by the University of Michigan. Dr.James Stanley is a vascular surgeon at the University of Michigan. He is one of the few surgeons in the world to perform vascular surgeries onsmall children. Children come from all around the world to see Dr.Stanley. They are known around the Universityof Michigan as “Stanley’sKids.” This fund was started to help defray the cost of travel andlodging for families whose children need these life savingsurgeries. Donations are put to good use! This past year a14-month-old boy from Kansas was in desperate need of Dr. Stanley’s help. He and his mother traveledto Ann Arbor from Kansas in search of life-saving care. Afterreceiving Dr. Stanley’s world-renowned care, the boy was ready to return home to the rest of his family. At the time of the boy’s discharge, however, the family’s insurance company refused to cover the costs of the medication he needed to take during his return trip to Kansas. The Stanley’s Kids Fund made it possiblefor the hospital to pay for the boy’s medication in full so that he had all he needed to travel home safely.
The fifth HEGP (Hopital Europeen G Pompidou) meeting on FMD was held on October 21st. This annual meeting brings together physicians from Bordeaux, Caen , Clermont-Ferrand , Grenoble , Lille , Saint-Etienne , Marseille, Nancy and Toulouse participating in a national network on FMD.
The French network in coordinated in Paris by PF Plouin (Hypertension Unit, HEGP), E Mousseaux (Department of Radiology, HEGP), and E Touzé ( Stroke Center , Hopital Saint-Anne, Paris). A registry designed to document phenotypic and genetic traits in patients with renal and/or cervical artery FMD is used for a national cohort study evaluating the progression of FMD lesions and for pathophysiological and genetic studies.
J Olin and P Mace (USA), as well as P De Leeuw (The Netherlands), A Morganti ( Italy ), and A Persu ( Belgium ) were invited to participate in this year’s meeting in order to exchange information and data and to consider harmonizing the US and the French registries. This would be a first step for organizing cooperative or complementary studies in this rare condition.
1st Annual US Conference on Rare Diseases and Orphan Products:
The FMDSA was represented by Lisa Foster, volunteer, at the NORD conference in Washington DC. The conference was held October 11-13th at the Omni Shoreham Hotel. The DIA, Drug Information Association and NORD, National Organization of Rare Disorders, presented a $1000.00 scholarship to the FMDSA to be used towards the meeting expense. To view the PDF document, please click here:
Spreading the Word
New Jersey ABWA Chapter hosts meeting, focuses on good cause!
by Cheryl Bailey
The Atlantic City Charter Chapter of the American Business Women's Association recently hosted Cheryl Bailey, Vice President of the Fibromuscular Dysplasia Society of America to present her program "Recent Accomplishments of the FMDSA" during the Chapter's September meeting, held in Egg Harbor Townshipm NJ. Mrs. Bailey detailed the society's launch of an International Patient Registry for patients with FMD, through the University of Michigan, which centers are participating, and what data is presently available. Annual renewal of membership was stressed by Mrs. Bailey, and the ABWA members were given the website address for renewing their membership and finding out more on FMD. The Chapter awarded Mrs. Bailey with a $100.00 check to FMDSA, which was immediately matched by ABWA member Virginia Quickmire for a $200.00 donation that evening.
Patricia Hackett, President ACCC/ABWA (left); Cheryl Bailey, VP FMDSA (right)
Napa Valley Fundraiser
The California fundraiser was a great success!!!!! This wonderful raffle organized by Betty and Bob Conway and Mimi Petersen was for a three night four day stay for two in a cozy cottage donated by Bob and Betty Conway (http://ourcountrycottage.org/). In addition to the stay the winner won a gift certificate for $100.00 to a fine Napa eatery, a bottle of BV's George's De Latour Private Reserve Cabernet , golf for two at Napa Valley Golf Club, Tickets for two on the Napa Valley Wine Train. Congratulations to the winner, Donna Lanza from Lake of the Pines, California and her husband Larry. A special thank you, to Dr John Laird of UC Davis for participating and pulling the winning ticket!
Rare Diseases in the News. A special insert in the Washington Post this week highlighted rare diseases, the need for more treatments, and the challenges of having a rare disease. To view the article published by the Washington Post July 2011, please click here.
FMD: An Overlooked Diagnosis
Our thanks to Jodi Roth and Dr. Jeff Olin for the highly informative video clip and story about Fibromuscular Dysplasia, as reported by "myFOX New York". Please click on the photo to read the story and see this excellent video about Jodi's experience with FMD and Dr. Olin's discussion of treatment and diagnosis.
"The Rare Disease That Isn't" -Wall Street Journal
We have very exciting news that we want to share with everyone. An article on FMD made front page news in the Wall Street Journal this past Saturday. This is the first time FMD has been highlighted in the National media. Circulation for the Wall Street Journal exceeds 2 million and FMD was highlighted on the front page! This is the greatest opportunity to date to spread awareness of FMD and we hope you share in our excitement.
FMDSA at the ASE Vascular Imaging Symposium
Kudos to Cheryl Bailey, Cecile Pileggi and Dr. Olin for spreading awareness at the ASE Vascular Imaging Symposium in Philadelphia on October 9th, 2010. Dr. Olin scanned Cheryl as part of their "hands on" demonstration of FMD, and all helped to explain to the many interested parties who visited the FMDSA table at the event.
FMDSA Visits UC Davis Vascular Center
Pam Mace and FMDSA volunteer Mimi Petersen visited the UC Davis Vascular Center and met with medical director Dr. John Laird and his staff to discuss care for patients with FMD, the FMD patient registry and ways to help raise awareness about this disease.
Dr. Laird and his team at the UC Davis Vascular Center are committed to helping patients with FMD and are proud to collaborate with FMDSA as a West Coast center serving patients with fibromuscular dysplasia. They are very motivated and we look forward to working with them. To learn more about this center click here. We would like to thank UC Davis for sponsoring our Annual Meeting this year in Cleveland, Ohio.
Fibromuscular Dysplasia PSA
Thank you to Terri Provost-Daar and Brad Daar as well as Dr Jeffrey Olin for their efforts in having a highly effective Public Service Announcement made about Fibromuscular Dysplasia. So far this PSA has been shown on local cable stations in CT and Ohio and is available for anyone who wants to help promote awareness about Fibromuscular Dysplasia. If you would like to approach your local cable television station or area service group or hospital to show this informative clip, please contact Chrissy Gribble at email@example.com.
Fibromuscular Dysplasia in the Fredericksburg News
Thank you to Kathy Beaver for helping to spread awareness. Kathy contacted her local newspaper, The Free Lance Star, and on August 2, 2009, her story was published on the front page under the title: "Nurse Surprised by Unusual Diagnosis." The story was also published on The Fredericksburg.Com. Way to go Kathy, for taking the time to get the word out about FMD!
Kidney Beginnings Magazine - May 2009
The FMDSA's Pam Mace RN and Dr. Jeff Olin had an article published in a recent issue of Kidney Beginnings Magazine. The article includes general information on FMD. Be sure to read the article: "..FMD is often underdiagnosed and undertreated leading to the misconception that it is a rare disease."
New York State Association of School Nurses: "Communicator" - Winter 2009
Read the article that was published in a recent issue of the Communicator, by Kari Ulrich. The article discusses Fibromuscular Dysplasia in general, and also how school nurses can play a critical role in diagnoses of FMD. and how school nurses must not minimize the important role of blood pressure screening as a tool that can be easily used for diagnosis.
International Stroke Conference 2009
Pam Mace and Chrissy Gribble just returned from the International Stroke Conference in San Diego. Two patients from the area Cindy Wong and Karen Schiff also attended for a day and were able to talk with physicians, nurses, firemen and paramedics educating them about their disease. The most common responses from physicians were either "it's a rare disease" or "it's not rare at all- I have lots of patients with the disease."
Most nurses had never heard of FMD and one nurse who has the disease did not know about FMDSA. We encouraged the nurse educators to add fmd to their stroke material as a cause of stroke and they all responded that they would. Doctors were amazed to find out about the Patient Registry and wanted to know how their facility could participate.
Mystery Diagnosis update
On February 13th-15th, Discovery Health Chanel's "Mystery Diagnosis" team was in Cleveland to film Pam Mace's story. The first day of filming was conducted at the Cleveland Clinic to recreate events that lead to Pam's diagnosis. The second day of filming was completed in studio, with interviews with several people including Dr. Jay Yadav from Piedmont Hospital in Atlanta. Dr Yadav was who first diagnosed Pam with FMD in 2001. The third day of filming was held at Pam's daughter's home in North Olmsted, Ohio, and her family was also able to participate. An air date has not yet been established, but will be posted as soon as we are informed.
We would like to thank the Cleveland Clinic for allowing filming to be done at their facility. The episode aired September 10, 2009. Please keep an eye out for repeat airings (and will be aired internationally at a later date). This episode will eventually also be available for purchase on iTunes.
Crain's Cleveland Business
Pam Mace was interviewed in a story that appeared in the Crain Cleveland Business newspaper on Tuesday, February 24, 2009. The American Nurses Association have also linked this article to "Smart Brief." Thanks Pam, for all your efforts in spreading awareness of FMD.