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EUROPLAN Conferences – Promoting National Rare Disease Policy

Março 2015

EUROPLAN Conferences - Promoting National Rare Disease Policy

The European Project for Rare Diseases National Plans Development (EUROPLAN) has been instrumental in stimulating debate around rare disease policy across the EU, notably through the establishment of EUROPLAN National Conferences. The project has supported the development of national rare disease plans and produced a common set of recommendations and indicators for these plans.

Since 2012, 23 out of 24 EUROPLAN National Conferences have been organised by national rare disease alliances and EURORDIS within the framework of the European Joint Action on Rare Diseases (2011-2015).

The strength and success of the EUROPLAN National Conferences lie in the philosophy of one common approach and format for all countries, applying the following principles so that conferences:

  • Are patient-centred.
  • Involve varied stakeholders (including clinicians, scientists, health authorities and patient groups) to incorporate all views and facilitate consensus.
  • Follow a common format and content guidelines covering all main key policy areas from the governance of a national rare disease plan, to codification and registration of rare diseases, research, access to medical care, orphan medicinal products and adapted social services.
  • Facilitate the integration of EU measures and recommendations into national policies and national health systems, for example, quality criteria for rare disease Centres of Expertise and also the EU Directive on Patients’ Rights in Cross-border Healthcare.

National rare disease alliances all agree that EUROPLAN Conferences have provided a great opportunity to bring various stakeholders together and that they have been fundamental in furthering discussion around EU rare disease policy.

Phase one of EUROPLAN (2008-2011), during which a first round of 15 EUROPLAN National Conferences took place, emphasised the need to adopt a national rare disease plan or to sustain any plan already in place. A report on the main results of these 15 EUROPLAN Conferences is available here.

Phase two of EUROPLAN (2012-2015) focuses on challenges experienced during the adoption and implementation of national plans and on how to turn national plan provisions into a reality that positively impacts the everyday life of people living with a rare disease. The second round of EUROPLAN National Conferences will finish in May 2015 when the Irish National Conference will take place.

The majority of final EUROPLAN National Conference reports from phase two are now available. These reports reflect on national discussions around rare disease policy that took place during the implementation phase of national rare disease plans.

It is important that rare disease patient organisations all over Europe continue to fuel national plans and participate in national and European decision-making. Significant progress has been made in recent years in terms of recognising rare diseases as a health priority but there is still a long way to go to ensuring equal access to care and social services for rare disease patients. All parties should work to maintain momentum in order to foster the implementation and sustainability of national rare disease plans across the EU.

The next EURORDIS Membership Meeting (29-30 May 2015, Madrid) will serve as a forum to exchange on national experiences and reflect on next steps in the development of national plans.

Eva Bearryman, Junior Communications Manager, EURORDIS