EURORDIS Open Letter #ActRare2024

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EURORDIS Open Letter #ActRare2024 HCFA TEAM May 23, 2024

EURORDIS Open Letter #ActRare2024

The Panhellenic Cystic Fibrosis Association signed the Eurordis Rare Diseases Europe #ActRare2024 Open Letter, which is addressed to the European Commission and the next European leaders, in view of the European Elections on 6 June 2024.

The letter is the result of the proceedings and sessions of the 12th European Congress on Rare Diseases (ECRD), held in Brussels on 15-16 May 2024. Over 700 participants from all over the world, representing all stakeholder groups of the rare disease community, such as patients, caregivers, doctors, patient representatives, policy makers, healthcare representatives, stakeholders, institutions, regulators, Member State representatives, etc. More about the conference here.

“As an Association that represents one of the largest populations of rare patients, the patients suffering from Cystic Fibrosis, the Panhellenic Cystic Fibrosis Association is proud to sign the Open Letter of Eurordis-Rare Diseases Europe. Eurordis, representing rare disease patients across Europe, is pushing for the shaping of future EU and national policies oriented towards improving the lives of rare disease patients in all European countries. We all join our voices together. We are sending an important message to Europe’s future leaders, urging them to address the needs of patients with rare diseases.” says Anna Spinou, President of the Panhellenic Cystic Fibrosis Association & Board Member of Eurordis- Rare Diseases Europe.

The Eurordis Open Letter calls on future European leaders to:

🔹 Keep health at the forefront of future policies and programmes.
🔹Develop a comprehensive European action plan for rare diseases, bridging different policy areas and streamlining existing efforts with clear and measurable targets.
🔹To directly address the needs of patients with rare diseases by incorporating the actions we have collectively identified into the work programmes of the coming years.

You can read the full text of the Open Letter, available for signature until 3 June here ➡️