Have your say: Help shape the future of rare disease policy in Europe
The European Parliament’s Committee on Public Health (SANT), newly established as a fully-fledged committee, is responsible for shaping EU policies on healthcare, pharmaceutical legislation, and public health. It has now launched a Consultation on Rare Diseases, seeking input from patients, caregivers, researchers, healthcare professionals, and organisations working in the field.
This is a crucial opportunity to ensure that the challenges faced by 30 million people living with a rare disease in Europe are heard at the highest level of EU policymaking.
Why this matters
The SANT consultation is aiming to provide a better understanding of the real needs of rare disease patients and those working in the field. The Committee is leading on key legislative and policy initiatives that will impact rare disease research, treatments, and access to care – including the ongoing reform of EU pharmaceutical legislation.
This is a key moment to remind EU policymakers that:
- Rare diseases must remain a public health priority.
- Stronger European cooperation is needed to improve access to diagnosis, treatment, and care.
- The EU should commit to a European Action Plan for Rare Diseases.
EURORDIS’ response: Our key calls to action
EURORDIS has submitted an organisational response to the consultation, urging the EU to take bold steps in:
- Committing to a European Action Plan for Rare Disease.
- Strengthening European cooperation to improve access to diagnosis, treatment, and care and patient-centred policies.
- Promoting people-centred policies that address social and economic barriers.
- Securing dedicated funding for rare disease research, innovation, and European Reference Networks.
While EURORDIS has submitted its own recommendations, the SANT Committee would greatly benefit from a wide range of submissions that reflect different perspectives from across the rare disease community.
We encourage individuals, patient organisations, clinicians, and researchers from across our community to submit their own responses, highlighting the most pressing issues they face, while perhaps taking inspiration from EURORDIS’ consultation response.
How you can contribute
The consultation is open until 31 March, and all members of the rare disease community are encouraged to share their views.
Survey tip!?
Want to provide more detailed input? The consultation survey allows for expanded answers beyond the standard multiple-choice options.
Select “Other” when answering a multiple-choice question to unlock an extra 100-character field, where you can add more context or insights.
Contact us
For any questions or feedback, please contact Valentina Bottarelli, Head of Policy and Public Affairs at EURORDIS: valentina.bottarelli@eurordis.org.