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

28 Special Solidarity Fund KCE Reports 133
4.3 EXPLORATION OF (COMPARABLE) SAFETY NETS IN A
SELECTION OF FOREIGN COUNTRIES
4.3.1 Objectives
The third research question focuses on the existence of comparable safety nets for cost
of treatment of rare diseases or rare indications in a selection of foreign countries. The
objective of this research question is twofold:
• Are there “mirror institutions” of the SSF or comparable safety nets
abroad?
• How is the care of selected cases of the targeted SSF population
organized in the selected countries?
4.3.2 Methodology
4.3.2.1 Selection of countries
The international benchmark exercise focuses on France, the Netherlands and Spain.
The common characteristics of these countries leading to this selection were
comparable health care systems (the public share of total expenditure on health
represent at least 66%) 15 , comparable living standards and their geographical proximity
to Belgium.
In addition to these common elements, the following aspects have contributed to the
final selection:
• The Netherlands
o The changes in the health provision and insurance system introduced
in 2005, leading to a further liberalisation of the health care system;
o The existence of a society for rare diseases (stichting zeldzame ziekten
fonds) - http://www.zzf.nl/.
• France:
o The existence of a national plan for rare diseases (2005-2008) with 10
strategic priorities established in 2004
http://www.eurordis.org/IMG/pdf/EN_french_rare_disease_plan.pdf).
o The European Commission’s public health programmes attached much
importance to the rare diseases. Many projects on rare diseases haven
been funded and important international networks at EU level have
been created. For rare diseases the ORPHANET and EURORDIS are
by far the most elaborated network on rare diseases. Both are French
initiatives
Eurordis, the European Organization for rare diseases is a patient
driven alliance of patient organizations and individuals active in the
field of rare diseases. www.eurordis.org
Orphanet, the portal for rare diseases and orphan drugs.
http://www.orpha.net/consor/cgi-bin/index.php
o The existence of GIS, a national institute for rare diseases (institute
des maladies rares). http://www.institutmaladiesrares.net
• Spain
o The existence of FEDER, the Spanish federation for rare diseases
(federacion Espanola de enfermedade rares)
http://www.enfermedades-raras.org/es/default.htm
o The existence of IIER, the research institute for rare diseases (the
instituto de Investigacion de enfermedades raras) -
http://iier.isciii.es/er/