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Make your voice heard and help advocate for improved rare disease policies and support

Share your experiences on how #OA / #TOF has impacted on your everyday life in the #RareBarometer survey:

https://www.eurordis.org/rare-barometer-launches-survey-social-dimensions

The survey will take around 20 minutes to complete.

The survey is open to all people living with a rare disease and their close family members from any country in the world.

It will help EURORDIS-Rare Diseases Europe, a non-profit alliance of 1000+ patient organisations, work towards and advocate for people with rare diseases to access their rights and participate in society on an equal basis with others.

For more information about the study itself, please visit – https://www.eurordis.org/rare-barometer-launches-survey-social-dimensions

closes on September 8, 2024

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