FMD-Be, the Belgian FMD patient association, supports the BEL-FMD project.

This Project initiated by Prof. Alexandre Persu (Cliniques Universitaires Saint-Luc, Université Catholique de Louvain) and Prof. Patricia Van der Niepen (UZ-Brussel, Vrije Universiteit Brussel) in collaboration with experts from seven Belgian universities includes a multicentric cohort study as well as a genetic project.
The multicentric cohort study aims to collect anonymously patient details about their disease, symptoms, treatment and outcomes .

This will enable a better understanding of the frequency of the disease in specific arteries, contribute to better diagnostic procedures, improved treatment and follow-up processes, and also allow an earlier intervention for those patients at risk of deterioration of their condition or of further complications.

This study also will promote a stronger network of cooperation between the expert centres, and in turn allow for a harmonization in patient care at the national level.

The genetic study aims to identify the genes that predispose the disease, primarily by analysing genetic markers distributed over the whole genome and comparing those of FMD patients with a “healthy” control group. This is being carried out at both a European and an International level. The identification of the predisposing genes will allow a better understanding of the causes, identify new diagnostic markers and hopefully lead to identification of medications or interventions that may slow the diseases evolution.

The initiators of BEL-FMD aim to increase the awareness of FMD within the medical community, with patients and amongst the general public.

It is within this initiative that two national (with the presence of International experts) and two International symposia (the first coordinated by Prof. A. Persu, Brussels and Prof. H. Gornik, Cleveland, USA; the second by Prof. A Januszewicz, Warsaw, Poland, Prof. Persu and Prof. H. Gornik) have already been held.

Meeting programs available here:

December 2016:  http://belhyp.be/wp-content/uploads/2016/11/Invitation-FMD-meeting-2016-final.pdf; and

February 2018 : https://www.en.fondazione-menarini.it/Home/Events/Revisiting-Fibromuscular-Dysplasia-and-Related-Vascular-Diseases/Presentation.

November 2019:
https://szkolenia.mp.pl/szkolenia/bigsite.html?congress_id=15756&page_id=215153

Finally they provide the expertise to validate the text and documents used on this FMD patient website and to help with any other possible future initiatives.

BEL-FMD projekt je dio većeg Europskog/internacionalnog FMD registra i inicijative, vođen od strane prof. Alexandrea Persua (Clinique Universitaires, Université Catholique de Louvain) uz potporu Europskog društva za hipertenziju (ESH) i  Europskog društva vaskularne medicine (ESVM).

Europski/internacionalni FMD registar i inicijativa također vode znanstveno vijeće koje je odgovorno za ažuriranje i prevođenje medicinskih informacija dostupnih na web stranici, u suradnji s Europskom mrežom pacijenata Euro-FMD.

Ako želite pročitati više informacija o Europskom/internacionalnom FMD registru i vidjeti detalje centara koji sudjeluju u njemu, posavjetujte se s člankom iz “Hypertension” 2016 ! Ažurirana lista centara koji sudjeluju će biti uskoro objaveljena na web stranici.

Ako želite pročitati ili downloadati poziv za sudjelovanje u Europskoj FMD istraživačkoj inicijativi,  kliknite ovdje .

Pacijenti koji žele sudjelovati u BEL_FMD studiji su pozvani (uz suglasnost svog liječnika) kontaktirati jedan od centara koji sudjeluje u tome ili poslati poruku na email adresu FMD-saintluc@uclouvain.be   (mail će biti proslijeđen specijalistu koji je upoznat s medicinskim problemom, geografskom lokacijom i jezikom kojim je mail pisan).

Ispod je popis centara koji sudjeluju u BEL-FMD studiji s imenom vodećeg liječnika.

Bruxelles

• Cliniques Universitaires St-Luc (UCL) – Prof Alexandre Persu (Odjel kardiologije)
• UZ-Brussel (VUB)– Prof Patricia Van der Niepen (Odjel nefrologije)
• Erasmus Hospital (ULB)– Prof Jean-Claude Wautrecht (Odjel kardiologije)

Leuven

• UZ- Gasthuisberg (KUL)– Prof Peter Verhamme (Odjel kardiologije)

Gent

• UZ-Gent (UG)– Prof Tine De Backer (Odjel kardiologije)

Antwerp

• UZ-Antwerpen (UA)– Dr Hilde Heuten (Odjel kardiologije)
• AZ-Sint Augustinus (GZA)- Dr Wouter Vinck (Odjel endokrinologije)

Liege

• CHU Sart-Tilman (ULg)– Prof Jean-Marie Krzesinski (Odjel nefrologije)

Pažnja!

1. Ovaj popis nije cjelovit popis svih centara koji sudjeluju.
2. Bez obzira na navedenu specijalnost u popisu, svi specijalisti rade u multidisciplinarnom timu, u suradnji s kardiolozima, nefrolozima, neurolozima, pedijatrima, kirurzima i vaskularnim radiolozima.