Who are we?

RDB is a nonprofit organization, managed by volunteers. Currently, RDB gathers together more than 50 associations and more than 30 individual patients.

On this page, you will find:

  • A brief historical account
  • Our partners
  • The structure of RDB
  • The list of the board of directors
  • The list of the medical advisors
  • The list of the administrative advisors.

Brief historical account

– 1999 (November). Meeting the parents of a patient victim of a rare cranial trauma is the origin of the project of RDB formation. A few days later, by chance, the TV announces the existence in Paris of a European “group” concerned by rare diseases, namely EURORDIS (European Organization for Rare Disorders). Three volunteers from CARN, a Namur nonprofit organization – André Massaux, Guy Pieters and Robert Gérard – went to Paris. Back home, they write down the statutes of RDB.

– 2000 : foundation of Rare Disorders Belgium.

– 2001: statutes of RDB are published in Le Moniteur, the official Belgian publication, on Feb. 8, 2001. Since 2001,RDB is a member of EURORDIS.

– 2009: RDB is acknowledged on Jan.19, 2009 as a representative association for handicapped persons, by an “arrêté ministériel” of the Walloon Region.

– 2011: RDB, together with RaDiOrg, Vlaams Patienten Platform (VPP), Patienten Rat, LUSS (see also the list of partners below) protects your interests through the application of the Belgian plan for rare diseases.

– 2012: at the end of the year, the register of RDB includes 114 members, namely 59 associations, 38 individual patients, 10 members of the board of directors and 7 advisors. Moreover, in 12 years, RDB had more than 1600 contacts. From these contacts a list of near 500 rare diseases has been created, to be found under the heading “patient contact” in the general list of the French section.

Partners

RDB, member of EURORDIS, has for partners:

  • RaDiOrg
  • LUSS (Ligue des Usagers des Services de Santé),
  • VPP (Vlaams Patienten Platform),
  • Patienten Rat,
  • NEW (Namur – Europe (Wallonie),
  • La Relève d’Adeline.

Structure

  • N° entreprise : 473.993.369
  • Moniteur Belge : 05106935
  • Bank account : IBAN = BE09 3501 0051 4957 / BIC = BBRUBEBB

Board of Directors

  • Prof. WATTIAUX-DE CONINCK Simone, Présidente, Département de Chimie Physiologique, Université de Namur
  • VECKMANS Georges, Vice- Président, MBA, California State University
  • BEAUJEAN Victor, trésorier, Conseiller en assurances
  • Dr LOUTE Guy, secrétaire, Interniste, Néphrologue
  • COMPERE Jean-Marc, Association X-fragile
  • CORVERS Jennifer, Association La Relève d’Adeline, Syndrome de Schinzel-Giedion, West,Tératome
  • HAEGHENS Chantal, Association Prader- Willi
  • HUET Jean-Marie, Association Belge des Maladies Musculaires (ABMM)
  • LEGRAIN Jacqueline, Association Elhers-Danlos
  • GÉRADAIN Christine, Association Noma’s Land
  • WAGEMANS Jacqueline, Association Sjögren (Administrateur honoraire)

Medical advisors

Their tasks are the following:

  • advise patients presenting with a rare or orphan disorder
  • promote contacts between patients affected by the same pathology
  • inform patients of scientific progresses
  • Dr FROIDMONT Claire, Santé publique, Co-Fondatrice de 3 centres au service de personnes polyhandicapées, les Perce Neige, la Douceur Mosane, les Coteaux Mosans.
  • Prof. GILLEROT Yves, Généticien
  • Prof. KOULISCHER Lucien, Service de Génétique humaine, Université de Liège et Université de Namur
  • Dr PIERQUIN Geneviève, Service de Génétique humaine, CHU, Université de Liège
  • Dr PIETERS Guy, Chirurgien pédiatrique, co-fondateur de RDB

Administration advisors

  • BEAUJEAN Victor, Conseiller en assurances
  • GERARD Robert, Président d’Honneur, Co-fondateur, Auditeur Hre à la Cour des Comptes, Prix Nobel de la Paix 1988
  • GOBEAUX Maggy, Secrétaire adjointe