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Share your experiences of rare disease treatments in a new survey

The European Organisation for Rare Diseases (EURORDIS) is asking patients and caregivers to share their experiences of rare disease treatments in the new ‘Rare Barometer Voices’ survey.

EURORDIS and the European Lung Foundation both work to support patient involvement in the ERN-LUNG, the EU-funded reference network for rare lung diseases.

EURORDIS has designed this 10-minute survey to learn from people affected by rare diseases. This includes information on:

  • If treatments are available in different countries
  • If treatments are accessible
  • The effects of different treatments

The survey is available in 23 different languages and is open to anyone from any country who is living with a rare disease. Family members and caregivers are also welcome to take part.

EURORDIS will use information from the survey to learn about the needs of people living with rare diseases. They hope that this information will help to improve treatment options and availability for people with rare conditions around the world.

If you are living with a rare lung condition, or you help to care for someone that does, please take 10 minutes to complete the survey in your language.

Read more about the Rare Barometer programme

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