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.
Your voice counts.
Tell Ursula 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.
Today there are only treatments for 6% of rare diseases. It takes an average of five years for a diagnosis. And people living with a rare disease remain marginalised in society. The COVID-19 pandemic has increased their vulnerability with disruptions to care for 84% of people. A recent Foresight Study tells us we cannot wait for European action on rare diseases.
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.
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.
- 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?
Some reasons from across our community:
“I have waited 5 years to have a diagnosis. No one should wait that long.” Hélène, France
“No more isolation, no more desperation, no more stigma. No more living on the margins of the society. No more deaths because care and treatment are too expensive, and social care seems complicated. No more discrimination for rare families!” Vesna, North Macedonia
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“To ensure that all people living with a rare disease get the opportunity to live their lives in the best possible way.” Stephanie, Sweden
“Too many rare disease patients are still undiagnosed or wrongly diagnosed, isolated and alone. We need to coordinate to reduce waiting times and to clarify care pathways for patients and families.” Dorica, Romania
“Why is it ok to put a price tag on my quality of life just because I was born with a specific genetic code?” Rebecca, Norway