OUR PRIORITIES FOR EU ELECTIONS: WHAT DO WE NEED?
The European Parliament elections, scheduled from 6 to 9 June 2024, present a critical opportunity for the rare disease community in the EU. As patients and advocates, participating in these elections across the 27 Member States allows us to influence healthcare policies, particularly those affecting rare diseases.
The Members of the European Parliament (MEPs) we elect will play a key role in shaping legislation, funding, and initiatives crucial for research, treatment, and support in this field.
This further underscores the importance of our engagement and informed voting to ensure that the specific needs and challenges of the rare disease community are effectively addressed at the EU level.
With these elections, European policymakers have a rare opportunity to bring the policy in step with the scientific, technological, and societal shifts and to ultimately improve the lives of the 30 million Europeans living with a rare disease.
To date, people living with a rare disease in Europe and beyond still have high unmet needs in a wide range of areas, including accessing early and appropriate diagnosis, treatment and health and social care.
“We need renewed European action for rare diseases to rebuild the momentum around national plans and strategies, and everything within them. Nobody can do it alone for rare diseases.” – Victoria, patient advocate
Rare diseases are an area where EU action can have exceptional added value, as knowledge and data are scattered and scarce, and national action is limited.
For all these reasons, EURORDIS-Rare Diseases Europe advocates that the candidates to the European Parliament and the future European Commission make rare diseases a priority.
Specifically, we call upon future EU policymakers to commit to the following priorities for the upcoming five-year term:
HOW CAN YOU CONTRIBUTE?
If you are a candidate, become a rare disease champion!
As a candidate for the European Parliament, you have the unique opportunity to champion the cause of rare diseases. By aligning with our mission, you can play a pivotal role in shaping a more inclusive and health-focused future for the EU. We invite you to show your support for the 30 million Europeans living with rare diseases.
If you represent a National Alliance, spread the word and reach out to prospective MEP candidates!
Represent a National Alliance? Join us in this crucial mission! Help us amplify our voice and connect with prospective MEP candidates. Spread the word, reach out to candidates using our template email and picture card, engage on social media with our messages, and publish our Manifesto on your website to share with your network. Download our materials!
You are a patient advocate, reach out to your National Alliance, which coordinates the campaign in your country.
Are you a dedicated patient advocate or a part of a patient organisation willing to help recruit rare disease champions? To support our cause, we invite you to reach out to your National Alliance, the coordinating body for this campaign in your country. They will guide you on how to effectively engage with MEP candidates and amplify our collective voice. Find your National Alliance.
WALL OF RARE DISEASE CHAMPIONS
OTHER MANIFESTOS WE SUPPORT
In our commitment to advocate for health, non-discrimination, and civil society engagement, we proudly endorse the following manifestos, each aligning with our vision for a healthier, more inclusive future:
- EU4Health Civil Society Alliance: 10 priorities to secure health on the political agenda.
- Civil Society for EU: Civil society EU 2024 elections campaign for better civic space and civil dialogue.
- European Disability Forum Manifesto: Building an inclusive future for persons with disabilities in the EU.
Let’s make sure rare disease remain a priority for Europe, together!