Patients wishing to participate in the BEL-FMD study will ind more information on the page “current research

The Symposium has been organized under auspices of the Department of Hypertension,
Institute of Cardiology, Warsaw, Poland and Cardiology Department, Cliniques Universitaires
Saint-Luc, Université Catholique de Louvain, Brussels, Belgium and University Hospitals
Harrington Heart & Vascular Institute, Cleveland, Ohio, USA.

To see the programme –

Polish Patient meeting as part of the 2nd International Symposium on FMD and Related
Vascular Diseases.
To see the program, click here

Patient information at the initiative of FMDgroep Nl.

To discover the program, click here :

To register, see the following link :

To discover the program, click here : UK and Ireland First Patient Information Day

Videos of meeting available here –

The first meeting to be organised by FMD-Be was held in the afternoon of the 24th February in the magnificent setting of the Club de la Fondation Universitaire, rue d’Egmont, Brussels.

FMD-Be would like to thank the Fondation Menarini, who sponsorship kindly provided simultaneous translations ( in English – French – Dutch) for the expert’s presentations and the discussions that followed.

To resume, twenty one patients were present  : coming mainly from Belgium, but also from the Netherlands, France, Switzerland, and the UK.

We would also especially like to thank Pam Mace, executive director of the FMDSA (USA) and Madelon Bouwmeester of FMDGroepNL (Netherlands) who were also present and have both shared their experiences and provided great support to us here at FMD-Be.

It was also wonderful to see Karen Rockell ( FMD UK and Ireland FB group/ Beat SCAD co- founder) and Rebecca Breslin ( Beat SCAD UK co-founder) with us representing UK Patients.

Three international experts presented the latest thinking on FMD and responded to questions from the patients : The Professors Patricia Van der Niepen (VUB-Belgium), Alexandre Persu ( UCL – Belgium) and Heather Gornik ( Cleveland – USA).

We thank them for their time and sharing their knowledge with us.

To see the program , click here : Program 24-2-2018 -WEB

To read the slides of Prof. Leeuw and A.Maas, see here.

The FMDSA (Fibromuscular Dysplasia Society of America) are hosting their 10th annual FMDSA meeting (also in Cleveland,Ohio) :  this is a meeting for FMD patients and FMDSA members.

The 10th annual FMDSA meeting was held the 20th May 2017 following the medical symposium in Cleveland.

Cathlin Jamison represented FMD-Be at this meeting.

What can she share about her experience at this meeting?

“I had the chance to meet with many patients and hear their FMD stories, and to see as FMD patients we all have so many different stories to tell. It was very inspiring to be in the room with so many patients and FMD experts and see the exchange of information and experiences.

For me personally, one thing that stands out from the patient meeting was hearing from the patients. Families who have had several members diagnosed, this is not something I have had experience of in Belgium – yet!  It was also great to hear from younger FMD patients, some diagnosed since childhood, and also from some of the men within the group.

It highlights for me the importance of patients sharing their stories within a group to help provide support within that community. The FMDSA already have patient stories on their website and it is something we are working on for the FMD-Be website.”


In terms of information given during the meeting :

The US registry –  now has 1663 patients enrolled in 14 centres.

-the most common manifestations of FMD are headaches, high blood pressure, followed by pulsatile tinnitus (whooshing), dizziness, cervical bruit and neck pain.

– mean age at diagnosis is 47 years, but it can be found at any age.

-men with FMD are more likely to have renal or visceral artery involvement, and are twice as likely to have dissection or aneurysm than women.

-some patients in the registry have now been followed for eight years.

-paediatric patients are more likely to have renal or mesenteric involvement, or middle aortic syndrome.

FMD and SCAD – they are clearly associated, and the link is being closely scrutinised.

It is now felt that up to 70% of women who suffer SCAD may have FMD (and not just in the coronary arteries), however, it is considered much rarer for an FMD patient to go on to suffer SCAD.

Interviews of some of the speakers present at the meeting are available here (in English)

You can find further information about the meeting :

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.

Over 100 clinicians and researchers worldwide from the United States, Canada and Europe came together to share the latest knowledge on FMD and SCAD.

Professor Alexandre Persu (UCL) was present to share his FMD expertise.

Cathlin Jamison also participated, representing FMD-Be to share a European patient perspective.

Four working groups came together to address certain FMD and SCAD related issues:

1.      Genetics/Reassessing the FMD Phenotype.

2.      Exercise and Activity After Spontaneous Coronary Artery Dissection.

3.       Maximizing Collaboration of International Registries.

4.       Patient Advocacy Working Group.

 We will advise you as updates from these working groups become available!

Read more  about this meeting on :