What is Rare 2030 Action?
Rare 2030 Action is a campaign for a European Action Plan on rare diseases to ensure that no person living with a rare disease is left behind by 2030.
Following the two year Rare 2030 Foresight Study proposing policy recommendations for a better future for people living with a rare disease, the rare disease community demands that their future is not left to luck or chance.
The main recommendation from the study was for a European policy framework. Actions at member-state level alone or legislative changes exclusively in specific areas are not enough. We need a new, collective European strategy for rare diseases to bring member states’ commitment to rare diseases under a common banner and take a step forward in the post-COVID world.
Why do we need a European Action Plan?
Despite progress in recent decades, a high number of unmet needs remain as people living with a rare disease wait years for diagnosis, receive disjointed care, and are subjected to a lack of treatment options.
We need Europe to take action on rare diseases by 2030, to:
- stop people dying prematurely from rare diseases
- improve the quality of life of people living with a rare disease
- ensure Europe is a bedrock for the best research, care, data, and treatments on rare diseases
The #30millionreasons campaign will officially launch in all European languages on 1 June. We need your help to guarantee that policy makers understand the need for European action on rare diseases. There are 3 things you can do to help ensure action is taken at a European level:
1) Share your reason for action on rare diseases in Europe – we need as many as possible.
2) Ask your networks on social media and in newsletters to share their reasons, too.
3) Invite your MEP to become a member of our Parliamentary Network of Advocates on rare diseases.
Resources for you to use to join us in Rare 2030 Action
- The Rare 2030 Recommendations tell you all there is to know about what it is that needs to happen in different fields.
- Share your reason for action on rare diseases in Europe on our dedicated platform – we need as many as possible.
- Topic-themed Knowledge Base Summaries give you all the information about topic areas – from policy frameworks to data, diagnostics to treatments.
- The Rare 2030 Executive Summary sets out clearly the rationale for a new European Policy Framework.
- Use the Rare 2030 Action factsheet to understand why we need a European Action Plan, and to share it with policy makers.
- Our social media toolkit sets out our visuals for you to use.
- Send the letter to your MEP to invite them to support rare diseases at the European Parliament. You can find your MEP here.
What was the Rare 2030 Foresight Study?
Supported by EU bodies, the Rare 2030 Foresight Study was a two-year project guiding a multi-stakeholder reflection on rare disease policy in Europe over the course of the next decade and beyond.
The Rare 2030 Foresight Study concluded with eight recommendations covering diagnosis, treatment, care, research, data, and European and national infrastructures. Together, these lay out the roadmap for the next ten years of rare disease policies, taking into account both current and future trends across science, politics, and society – to ensure that the future of the 30 million people living with a rare disease is not left to luck or chance.
RARE 2030 FORESIGHT STUDY VIDEO