Optimalisatie van de werkingsprocessen van het Bijzonder ... - KCE

162 Special Solidarity Fund KCE Reports 133
9.11.2 Activities of the patient organizations
The objectives and activities listed below were mentioned by all the interviewed patient
organizations:
• Support exchange of information regarding the rare disease towards
patients in close collaboration with the medical profession (diagnosis,
treatment and evolution of the disease);
• Support contacts between patients and their families and provision of
moral support;
• Foster networking between patients, their families and the medical
profession. The treatment of rare diseases is often provided in university
hospitals or reference centres, which still act too isolated;
• Organise leisure activities for patients and their families;
• Create awareness for the specific needs of patients that have rare
diseases, their relatives by putting their specific situation and problems in
the spotlight.
All patient organizations interviewed have developed a website (www.debra-belgium.be;
www.ph-vzw.be; www.boks.be; www.nema.be; www.radiorg.be) providing essential
information on the rare diseases they cover. Additional information on contact persons,
internal structure and scheduled activities as well as links to other parent organizations
can be found.
The activities of the patient’s organizations are largely based on the commitment of
numerous volunteers, who are often patients themselves or relatives of patients. The
deployment of paid staff, financed with own financial sources, is only feasible for the
bigger organizations but remains relatively limited.
Larger patient organizations, which are often umbrella organizations have several
working or diagnosis groups, each focusing on a specific disease or handling a specific
theme.
All patient organizations indicate that it is hard to create awareness and get attention
for the specific needs of patients with a rare disease. The small scale of these patient
organizations and the limited number of patients they represent makes it hard to
influence “policy makers”. Joining of forces is essential.
Although patient organizations represent and group patients that have a specific rare
disease, there is no “one to one relation” between a rare disease and the treatment
that is necessary. For each of them, the medical treatment can differ substantially. As a
consequence the financial costs related to their treatment also differ a lot. Each case is
unique and needs to be handled this way.
9.11.3 Knowledge on the existence of the SSF
The respondents became aware of the existence of the SSF via the following channels:
• Information provided by the treating medical doctor.
• Other patient organisation.
• Information provided by employees (social workers) of recognised
reference centres
• From the exchange of information between their patient members leading
to knowledge on the fact some of them got financial support from the SSF
while others, confronted with the same medical expenses, did not.
• Via a concrete case on feeding pumps, some years ago. As an individual
consumer it was at that time impossible to purchase or rent this
equipment. The hospital and sickness fund looked for solutions for this
particular case and mentioned the SSF.