Open Letter signed by thousands across rare disease community presented to European Commission
July 202423 July 2024, Brussels – EURORDIS-Rare Diseases Europe has presented an Open Letter to Stella Kyriakides, European Commissioner for Health and Food Safety, outlining key policy recommendations for the EU’s rare disease strategies over the next five years.
The Open Letter, the key outcome of the 12th European Conference on Rare Diseases and Orphan Products (ECRD 2024) held on 15-16 May 2024, has garnered support from over 2,000 signatories, including individuals with rare diseases and their close family members, and representatives from patient organisations, scientific communities, academia, industry, and policymakers across Europe.
At today’s meeting in Brussels, the letter was formally delivered by EURORDIS President Avril Daly, Chief Executive Virginie Bros-Facer, and Public Affairs Director Valentina Bottarelli. They emphasised the unified appeal from Europe’s rare disease community for detailed policy actions from the European Commission and Kyriakides’ eventual successor at DG SANTE.
Virginie Bros-Facer, EURORDIS Chief Executive Officer, commented on the presentation of the Open Letter to the European Commission:
We are privileged to have met with Commissioner Stella Kyriakides to present the calls of Europe’s rare disease community. Throughout her leadership, she has been attentive to the unmet needs of EU citizens with rare diseases and has recognised the value of EU-level policy action. Our discussion covered various topics, especially the potential for expanded newborn screening across the Union, which is an area very close to the heart of the Commissioner, where much more can be done by the EU to reduce the striking inequalities across the European region.
We are pleased that Commissioner Kyriakides praised EURORDIS for its advocacy for people with rare diseases across Europe. She encouraged us to persist in advocating for a revision of the EU’s pharmaceutical legislation, currently under review by the Member States in the Council of the EU, and for enhanced support for the mental health of families affected by rare diseases. She rightly acknowledges that efforts in these areas are essential to truly address the most pressing unmet needs of our community.
The European Commission and Stella Kyriakides’ successor now have a crucial opportunity to transform the lives of people with rare diseases by prioritising them in the new legislative term. Establishing an overdue European Action Plan for Rare Diseases is urgently needed. Support from over 2,000 signatories, including families, patient organisations, and industry, shows strong community consensus for decisive action.
Our calls for EU action have long been echoed by EU institutions and Member States. The President of the European Commission, Ursula von der Leyen, and her future Health Commissioner must prioritise health in the next EU Strategic Agenda and establish a true European Health Union, including a plan for rare diseases. The European Parliament, the European Economic and Social Committee (EESC), the European Court of Auditors, and all 27 Member States’ health ministers have long advocated for a dedicated European policy strategy on rare diseases. Today, the current Commissioner reiterated her support for this strategy backed by EURORDIS and the wider rare disease community.
A European Action Plan would add value across the region, especially where national policies fall short due to smaller patient populations, limited resources, and expertise. We hope the new five-year legislative term will build on the progress made and the positive legacy of Kyriakides. EURORDIS remains committed to improving policies and legislation to enhance diagnostics and expand access to treatments and care, as outlined in our Open Letter.
The Open Letter from ECRD 2024 features the following policy calls on the European Commission to:
1. Maintain Health at the Forefront:
- Develop a comprehensive European Action Plan for Rare Diseases, integrating diverse policy areas with clear, measurable objectives.
- Ensure health remains a top priority in future EU policies and programmes.
- Address pressing needs of the rare disease population in upcoming work programmes.
2. Advocate for Future EU Leadership:
- Prioritise health in the European Parliament and Commission’s future mandates.
- Secure a substantial health budget under the Multiannual Financial Framework 2028–2035.
- Strengthen a resilient European Health Union beyond crisis preparedness.
3. European Action Plan for Rare Diseases:
- Coordinate actions across EU institutions and member states to address fragmented care and support systems.
- Include the Action Plan in the European Commission’s 2024-2029 Work Programme.
4. Detailed Policy Framework Recommendations:
- Establish clear, measurable objectives and a multistakeholder body to oversee collaborative actions.
- Enhance cross-country cooperation on newborn screening and clinical research.
- Explore novel funding models for treatments and centralised healthcare services.
- Integrate psychological support into patient care and recognise patient organisations for community support.
About EURORDIS-Rare Diseases Europe
EURORDIS-Rare Diseases Europe is a unique, non-profit alliance of over 1,000 rare disease organisations from 74 countries that work together to improve the lives of the 30 million people living with a rare disease in Europe. By connecting people, families, and rare disease groups, as well as by bringing together all stakeholders and mobilising the rare disease community, EURORDIS strengthens the patient voice and shapes research, policies, and services.
Contact
Julien Poulain
Communications Manager
EURORDIS-Rare Diseases Europe
Julien.poulain@eurordis.org
+33 6 42 98 14 32