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

Toolkit

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.

SUMMARY OF THE FINAL RECOMMENDATIONS