#30millionreasons for European Action

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There are 30 million people living with a rare disease in Europe. Yet no country can tackle the challenges of rare diseases alone. Their future depends on policy makers taking European action now.

Read our factsheet in 23 languages!

Every person living with a rare disease is a reason for Europe to take action on rare diseases that leaves no one behind by 2030.

Your voice counts. Help us make sure policy makers make the right decision for our future. There are 3 things you can do to help ensure action is taken at European level:

  1. Tell Urusla von der Leyen, the President of the European Commission, YOUR reason why Europe needs to take action for a better future for people living with a rare disease by 2030.

  2. Share #30millionreasons on social media and in your newsletters.

  3. Ask your MEP to join the Parliamentary Network of Advocates on rare diseases.

Taking these actions will help build the support for European action on rare diseases across Europe. We need to show that, although each disease is rare, we have #30millionreasons for Europe to take action.

Take action now! button

 

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 in specific areas are not enough. We need a new European collective strategy for rare diseases to bring Member States’ commitment to rare diseases under a common umbrella and mark a step forward in the post-COVID world.

 

Why do we need a European Action Plan?

Despite progress in recent decades, a high level of unmet needs remain as people living with a rare disease wait years for diagnosis, have disjointed care, and a lack of treatment options.

We need Europe to take action on rare diseases by 2030 to:

  • Stop people losing their lives too young from rare diseases.

  • Improve the quality of life of people living with a rare disease.

  • Ensure Europe is a global leader in rare disease innovation.

We need your help to ensure that policy makers understand that European action on rare diseases is needed! 

 

Resources for you to use to join us in Rare 2030 Action! 

This is a live page so check back for more resources soon! If you think something is missing or you would like something in your language, please contact campaigns@eurordis.org

  • Use the Rare 2030 Action factsheet to understand why we need a European Action Plan, and to share with policy makers! 

  • Our social media toolkit sets out our visuals for you to use to create buzz across your networks.

  • The Rare 2030 Recommendations tell you everything you need to know about what needs to happen in different areas.

  • The Rare 2030 Executive Summary sets out clearly the rationale for a new European policy framework. 

  • Topic based Knowledge Base Summaries give you all the information you need to know about different topic areas, from political frameworks to data, diagnostics to treatments. 

  • 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 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 sets 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.

 

 
La voz de los pacientes de enfermedades raras en EuropaEURORDIS La voz internacional de las personas que tienen enfermedades rarasRare Disease International Reuniendo a pacientes, familiares y expertos para compartir experiencias en un foro moderado en distintos idiomas. RareConnect El Programa Rare Barometer es una iniciativa de EURORDIS que realiza encuestas para transformar las experiencias de los pacientes con enfermedades raras en cifras que puedan compartirse con los responsables políticos.Rare Barometer Una campaña internacional de sensibilización que se celebra todos los años el último día de febrero, El Día de las Enfermedades Raras es una iniciativa de EURORDISRare Disease Day Únete al mayor grupo de partes interesadas en toda Europa, en la Conferencia Europea sobre Enfermedades Raras y Medicamentos Huérfanos que se celebra cada dos años. ECRD es una iniciativa de EURORDISEuropean Conference on Rare Diseases