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.
YOUR VOICE COUNTS.
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?