Czech Presidency presents a Call to Action on rare diseases
Jakub Dvořáček, Deputy Health Minister of the Czech Republic, has presented a call to action on rare diseases at the Expert Conference held in Prague on 25-26 October. The Czech Republic thus commits to moving forward with a European action plan on rare diseases, to secure the future of the 30 million people living with a rare disease in Europe. The call to action has already been endorsed by France.
The Call to Action draws on discussions at the Expert Conference to include several recommendations:
- To adopt a European Action Plan on Rare Diseases to support and complement ongoing and future efforts at both the EU and Member State level to reduce the unmet needs of the 30 million people living with a rare disease in the EU.
- To support the early diagnosis of people living with a rare disease, specifically by supporting the initiatives to ensure availability and equally accessible NBS programmes in the EU that can benefit from a coordinated EU-wide approach, as well as to support an approach to an expanded number of disease areas and countries across Europe to better diagnose currently “unsolvable” cases.
- To evolve the incentives framework to maintain predictability for sponsors while enhancing Europe’s competitiveness through the upcoming revision of the Orphan Medicinal Products and Paediatric Regulation.
- The Call to Action also puts forward a strong message to improve access to treatments, including further strengthening European cooperation in pricing and negotiations, while respecting current division of competences.
- On holistic care and integrating European Reference Networks into national health systems, the call recognises the need for sustainable and proportionate investment from national and EU budgets, and a fully-fledged data strategy for rare diseases in alignment with the European Health Data Space.
Following the conference, EURORDIS has published a response welcoming this Call to Action and the commitment of the Trio Presidency – France earlier this year and now the Czech Republic – to support a European Action Plan on Rare Diseases. Yann Le Cam, EURORDIS' Chief Executive Officer, said: "This Call to Action reinforces the urgency and will of Member States to strengthen collaboration on rare diseases at the European level. It is a major step forward, with Czechia establishing a clear stand on how a European Action Plan on Rare Diseases will lead our health union".
The rare disease community is now calling on all Member States to endorse the Czech call to action in view of the EPSCO Council in December and on the European Commission to introduce a new policy framework on rare diseases.
