Share your reason for action on rare diseases!

Rett syndrome is one of around 6000 rare diseases but is one the more common ones affecting 1;10,000 females and 1;40,000 males. We do not know how many people there are living in Europe with Rett syndrome but there are 30 million people living with a rare disease. The future for people living with Rett syndrome and other rare diseases can be improved but policy makers need to take action now.


Eurordis have launched a campaign to tell Ursula von der Leyen, the President of the European Commission, why Europe needs to take action for a better future for people living with a rare disease by 2030.

They are asking you to share your reason why you need European action on rare diseases. Click on this link https://action.eurordis.org/ to add your voice to the campaign.

We all have a role to play: as a person living with or caring for someone with a rare disease, as their friends and family, as a patient advocate, as a doctor, as a healthcare professional, as a policy maker, as someone working in the rare disease field. 

We have #30millionreasons for Europe to take action 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

What’s your reason?

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