report on rare disease research, its determinants in ... - Orphanet

REPORT ON RARE DISEASE RESEARCH, ITS DETERMINANTS IN EUROPE AND THE WAY FORWARD
plans include the national participation in the E-Rare projects, as an efficient means of funding RD
research.
An extension of E-Rare (E-Rare 2) is funded today under the FP7 for the period 2010-2014. The main
goal will be the development of a joint translational RD research programme, with wider European
collaboration, an increase in communication, the creation of indicators, the launch of yearly JTCs, the
development of a strategic research policy (to increase national funding), and the elaboration of
plans for the sustainability of the E-Rare network. The first E-Rare 2 call 24
(and the third call since the
E-Rare project first began in June 2006) is now ongoing. Nine countries have joined this call: Austria,
Belgium, France, Germany, Greece, Israel, Italy, Spain and Turkey.
2.2.2. Initiatives and Incentives at the Member States level
2.2.2.1. AUSTRIA
Research activities
Currently, there is no specific and explicit funding policy for rare diseases in Austria. In theory,
funding is available through grant applications at different funding bodies (for instance, the Fonds zur
Förderung der wissenschaftlichen Forschung (FWF), the Nationalbank, or minor resources such as the
Fonds des Bürgermeisters der Bundeshauptstadt Wien). However, funding follows a bottom-up
approach, meaning that applications from all medical disciplines and, in some instances, totally
unrelated medical, as well as non-medical, research fields compete with each other in a peer-review
selection process, eventually resulting in a selection bias towards projects addressing more common
diseases.
An alternative source of funding is provided by occasional project calls launched by the Austrian
Ministry of Science. In the past 4 years, one of these calls was dedicated to rare diseases. Moreover,
some fundraising patient organisations finance rare disease research projects. One strategic priority
in the Austrian national plan will be the implementation of a defined, separate funding budget in the
main existing research bodies, which will be specifically dedicated to research on rare diseases, as
mentioned in the National Plans segment (“Establishing selective funding for research on rare
diseases”).
E-Rare
Austria was not an official partner in the E-Rare consortium before 2009 and did not participate in
the first E-Rare Joint Transnational Call in 2007. The Fonds zur Förderung der wissenschaftlichen
Forschung (Austrian Science Fund) 25
joined the second E-Rare Joint Transnational Call in 2009, and
around € 580 000 of funding was granted for Austrian teams participating in 3 projects. Austria will
participate in the 3 rd Joint Transnational Call in 2011.
Participation in European projects
Austrian teams participate, or have participated, in the following European Reference Networks for
rare diseases: EUROHISTIONET, NEUROPED (main partner), Paediatric Hodgkin Lymphoma Network
and PAAIR. Austrian teams participate, or have participated, in European research projects for rare
diseases including: BNE, CLINIGENE, EMSA-SG, EMINA, ENRAH, ENCE-PLAN, EURIPFNET, EUROTRAPS,
EURO-LAMINOPATHIES, EUROPEAN LEUKEMIA NET, EURO-IRON1, GENESKIN,
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