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Open Letter signed by thousands across rare disease community presented to European Commission 

Home » Open Letter signed by thousands across rare disease community presented to European Commission 

23 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:

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