Photo of Ursula von der Leyen, European Commission PresidentADVOCACY

Call for European strategy on rare diseases

On Rare Disease Day, 48 Members of the European Parliament (MEPs) wrote to the President of the European Commission, Ursula von der Leyen, calling on her to deliver a comprehensive European strategy on rare diseases.  The goal is to improve the lives of the 30 million European citizens living with a rare disease.

The letter from MEPs argues that the European Commission should establish a European strategy on rare diseases.  This would bridge national and European legislation, policies, and programmes.

What are the common challenges and how could a European strategy on rare diseases help?

They outlined some of the common challenges faced by people living with a rare disease like osteogenesis imperfecta, such as:

  • The average time for accurate diagnosis of a rare disease is about 5 years
  • Only 5% of people living with a rare disease have received a transformative treatment approved for the entire EU
  • 22% of people with rare diseases could not get the treatments they needed because they were not available where they live.  This reflects the fragmentation of the market across the Member States
  • 52% of people living with a rare disease or their carers say that their condition has a severe impact on everyday life

The MEPs pointed out that “there is no option but to work collaboratively in the area of rare diseases“.  They also noted that “it is time to act and propel rare diseases as an engine for a European Health Union“.

Read the full letter here.

How can OIFE help to build connections in rare diseases?

OIFE supports the call for a European strategy on rare diseases and encourages OI organisations to work together.  OIFE also has strong links with other European-wide stakeholders such as ERN BOND, the European Reference Network on Rare Bone Diseases. We work to establish links with people working on other rare bone diseases as well as osteogenesis imperfecta. See more about the work that OIFE is doing to encourage connections between different stakeholders interested in rare bone conditions.

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