#30millionreasons for European Action on rare diseases is a campaign calling upon the European Union to introduce a new European rare diseases framework.
The last strategy at this level was over 14 years ago, and since then technology, science and values have changed. More than anything, the 30 million people living with a rare disease in Europe still have a high level of unmet needs, waiting years for a diagnosis, experiencing disjointed care, and a lack of treatment options.
EURORDIS-Rare Diseases Europe believes that Europe is in a position – and has the responsibility – to change that. Introducing a new, comprehensive action plan on rare diseases would improve the lives of people living with a rare disease:
By bringing together all policy areas and initiatives under one framework to optimise work across these areas.
By connecting experts, knowledge and data across the European Union and actions in the Member States.
By bringing a new focus to national plans and strategies on rare diseases, so that scientific, technological and clinical advances reach every person living with a rare disease.
By creating an ecosystem that fosters innovation across every area of our lives.
By setting common, measurable goals for Europe to reduce inequalities, in line with the United Nations Sustainable Development Goals.
Through this campaign, EURORDIS-Rare Diseases Europe, alongside its National Alliances, European Federations and member organisations has raised the voice of every person living with a rare disease by ensuring that their reasons for why change is needed are at the forefront of the discussions.
What did the #30millionreasons campaign do?
EURORDIS-Rare Diseases Europe asked European Federations, National Alliances for Rare Diseases and 984 Patient Organisation Members, as well as the wider rare disease community to share their personal reasons for change.
Across Europe, over 2100 people – those living with a rare disease, parents, siblings, friends, advocates, healthcare professionals and researchers – shared their reasons why Europe must act.
These are personal experiences, hopes and fears that are moving, motivating, sometimes devastating, impassioned and humbling. You can read them here!
What have we done with the #30millionreasons you shared?
We are proud to share these reasons with you at reasons.eurordis.org, where you can find every reason organised by country, as well as case studies and letters of support from other stakeholders.
We also produced a limited number of copies of a book with the reasons in it, which has been presented to policy makers and influential figures around Europe. It is important that those in the driving seat for rare disease policies understand how technical policies affect real people.
Four patient advocates from across Europe shared their reasons in these videos.
You can also share these reasons with your policy makers and networks!
Why do we need European Action on rare diseases?
Though great strides have been made in rare diseases, progress remains slow, disjointed and insufficient. In 2021 the Rare 2030 Foresight Study put forward its recommendations for the next decade of rare disease policies in Europe; a solution to meet the unmet needs of these 30 million people.
A renewed focus on rare diseases as a public health priority through strengthened cooperation and coordination of Member States will ensure that scientific, technological and therapeutic advances result in the greatest impact for the 30 million people living with a rare disease in Europe – a vulnerable population continually challenged by premature death, significant inequalities in health and well-being, and a lack of access to effective treatments – all most recently exaggerated by infectious disease pandemic and geopolitical conflict.
We strongly support strengthening the cooperation and coordination of Member States on rare diseases through renewed European Action now to:
- provide a comprehensive and cohesive strategy across the European Commission policy areas and programmes, integrating EU and national level actions;
- create the ecosystem required to address the unmet needs and persisting inequalities across Europe all along the patient journey in accessing a diagnosis, treatments and care;
- keep pace with new technologies, new values and new expectations of Europe’s citizens;
- sustain the European Commission’s strategic approach in addressing a distinctive domain of high European added-value and bring together existing and upcoming actions, across countries, sectors and policy areas, and across the rare disease pathway, where the EU can achieve the most impact under one interconnected framework.
What was the Rare 2030 Foresight Study?
Supported by EU bodies, the Rare 2030 Foresight Study was a two-year study that guided a multi-stakeholder reflection on rare disease policy in Europe through the next ten years and beyond.
The Rare 2030 Foresight Study concluded with eight recommendations covering diagnosis, treatment, care, research, data and European and national infrastructures setting out the roadmap for the next decade of rare disease policies. These take into account both current and future trends across science, politics and society – to ensure that the future of 30 million people living with a rare disease is not left to luck or chance.
- Find every reason from your country, case studies, and videos on the campaign for your use on our dedicated platform #30millionreasons for European Action on rare diseases. Share these with your policy makers and networks now!
- Read EURORDIS’s Working Proposal: Europe’s Action Plan for Rare Diseases to understand what we think a European rare disease framework should look like.
- Understand how policy makers and experts from across Europe support the proposal for reinforced EU action on rare diseases in our report from the High-level Ministerial Conference: Care and innovation pathways for a European rare diseases policy under the French Presidency of the Council of the European Union
- The Rare 2030 Foresight Study Recommendations tell you everything you need to know about what needs to happen in different areas.
- Read three key reasons (in 23 languages!) why we need EU action on rare diseases in our #30millionreasons factsheet