EURORDIS Launches Pre-Election Campaign for Rare Disease Equity
Thursday, 29 February 2024, Brussels – On the occasion of Rare Disease Day, EURORDIS-Rare Diseases Europe has launched its Championing the Rare (#ActRare2024) campaign, which is calling on the EU’s next leaders to take specific policy actions to make sure that the 30 million people living with a rare disease in Europe can have longer, healthier and better lives.
In the face of the persistent inequities and systemic failures facing people with rare diseases across the EU, the policy recommendations of the EURORDIS Championing the Rare campaign emerge as a clarion call for urgent, transformative action.
Targeting prospective European Parliament members in the June 2024 elections, nominees for the next European Commission, and other prospective EU policymakers, the #ActRare2024 campaign outlines eight vital policy domains where advancements are imperative for the rare disease community and the building of a truly inclusive European Health Union.
These proposals are grounded in the findings of the landmark Rare 2030 foresight study. Commissioned by the European Parliament, financed by the European Commission, and spearheaded by EURORDIS, the two-year Rare 2030 study concluded in 2021, setting forth precise policy recommendations designed to meet specific objectives by the year 2030.
The eight key policy calls of EURORDIS’ Championing the Rare campaign include:
- Establishing a comprehensive European policy framework on rare diseases.
- Promoting earlier, faster, and more accurate diagnoses.
- Integrating national and European healthcare pathways.
- Ensuring timely access to affordable and innovative treatments.
- Delivering integrated, person-centred and lifelong holistic care.
- Boosting innovative and needs-led research and development.
- Optimising data for patient and societal benefit.
- Supporting sustainable and resilient treatment development.
Concurrent with the launch of the Championing the Rare campaign, EURORDIS and more than 20 national rare disease alliances from across the EU have penned a letter to Ursula von der Leyen, President of the European Commission, urging the adoption of the proposed European Action Plan for Rare Diseases in the Commission’s work programme for 2024-2029.
Launching the Championing the Rare campaign, Yann Le Cam, Chief Executive Officer of EURORDIS, said:
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The campaign launches one year after Frédérique Ries MEP, Chair of the Network of Parliamentary Advocates for Rare Diseases, was the lead signatory of a letter (23 February 2023) sent from 48 MEPs to the European Commission President calling for a European Action Plan for Rare Diseases.
Endorsing the EURORDIS’ latest campaign, Ms Ries MEP said:
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Reiterating the particular message about the need for a European Action Plan for Rare Diseases, the letter sent today from EURORDIS and national rare disease alliances – whose publication coincides with the Championing the Rare campaign launch – emphasises that the Action Plan should “bridge national and European legislation, policies and programmes across the Pharmaceutical Package, the European Health Data Space, European Reference Networks, Europe’s Beating Cancer Plan, EU4Health, Horizon Europe, the European Pillar on Social Rights, the European Disability Strategy, and beyond”.
For additional details on the calls of the Championing the Rare campaign and information on how you can lend your support to the rare disease community, visit the #ActRare2024 campaign page.
You can also read the letter sent from EURORDIS and national rare disease alliances to President of the European Commission Ursula von der Leyen on the need for a European Action Plan for Rare Diseases.
Download PDF
Download the letter to the European Commission President from EURORDIS and national rare disease alliances, 29 February 2024
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