NATIONAL RARE DISEASE POLICIES
EUROPLAN national conferences/ workshops are intended to promote the implementation of national plans for rare diseases and facilitate the integration of EU rare disease policies and recommendations into the national system, for example on ERNs, access to orphan drugs, utilisation of orpha codes, patient registries, research…The EUROPLAN national conferences/ workshops are jointly organised in each country by a National Alliance of rare disease patients’ organisations and EURORDIS–Rare Diseases Europe.
These conferences have been assessed instrumental and one of the best forum to discuss national plan or strategy for rare diseases. The strength of a EUROPLAN national conference lies in its shared philosophy and format:
- Patient-led: National Alliances are in the best position to address patients’ needs;
- Multi-stakeholders: National Alliances ensure to invite all stakeholders involved for a broad debate;
- Integrating both the national and European approach to rare disease policy;
- Being part of an overarching European Joint Action that provides the legitimacy and the framework for the organisation of EUROPLAN national conferences/workshops;
- Helping national authorities adhere to the obligations stemming from the Council Recommendation of 8 June 2009 on an action in the field of rare diseases.
Altogether, 41 EUROPLAN national conferences took place in the framework of the first EUROPLAN project (2008-2011) and the EU Joint Action of the European Union Committee of Experts on Rare Diseases – EUCERD – (2012- 2015).
Within RD-ACTION, 20 conferences will have taken place by the end of the Joint Action. The National Alliances have identified key national priorities to be discussed with all the stakeholders and national authorities. Most of them tackle the issue of:
- Centres of Expertise and ERNs;
- Integrating rare diseases into mainstream social policies;
- Access to treatments;