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KCE Reports 133 Special Solidarity Fund 161
9.11 RESULTS OF THE INTERVIEWS WITH THE PATIENT
ORGANISATIONS
9.11.1 Brief presentation of the interviewed patient organizations
9.11.1.1 DEBRA
Debra (Dystrophic Epidermolysis Bullosa Research Association) was founded in 1978 in
the United Kingdom and as non-profit organization in Belgium in 1999.
EB (Epidermolysis Bullosa), a rare disease, can broadly be classified into three main
groups: EB simplex, junctional EB and dystrophic EB. The exact number of EB patients in
Belgium is not known, since no registry of the disease exists. The annual number of
patients born with EB is limited and many of these children die at a young age. The
database of Debra Belgium contains +/- 80 records of patients or families confronted
with EB.
9.11.1.2 PH Belgium
The patient organization "pulmonary hypertension" Belgium was founded in 2001. In
2003, the organization joined the European Organization PHA Europe. The number of
patients with PH (pulmonary hypertension) in Belgium is estimated around 350, the
number of members of PH Belgium is situated around 150 people. PH is divided into 4
classes (I,II,III,IV) according to NYHA (New York Heart Association) classification. The
severity of the disease increases in ascending order. Class IV patients get their
treatment (drugs) usually via an electronically controlled pump system.
9.11.1.3 BOKS
BOKS (Belgian organization for children and adults with metabolic disorders) was
founded in 1994. This umbrella organization represents 1300 diseases, which are
individually too rare to generate interest and support from the wider public. BOKS
represents about 550 households, of which 450 children are confronted with a
metabolic disorder. 30 children are still waiting for the exact diagnosis of their disorder,
50 children died in the meantime. BOKS database includes around 1000 records.
9.11.1.4 NEMA
NEMA, the Flemish patient organization for neuromuscular diseases was founded in
1987. The members of this umbrella organization represent a wide variety of
approximately 50 neuromuscular disorders. Nema welcomes not only patients but also
parents, family members, friends, professionals or other relatives. Thanks to their close
cooperation with the neuromuscular reference centers (NMRC’s), there are able to
keep their medical information up to date.
9.11.1.5 Radiorg.be
Radiorg.be (rare diseases organization Belgium), is founded in January 2008 and
recognized by Eurordis as the Belgian Alliance for Rare diseases. Radiorg.be is an
umbrella organization representing approximately 80 very specific rare disease patient
organizations. Radiorg.be represents 6.5% of the Belgian population (65,000 people) of
which approximately 75% are children. As the objectives of radiorg.be as an umbrella
organization are quite different from the 4 other specific patient organizations on rare
diseases, a separate paragraph is written on radiorg.be