Published: 10/08/2016 Tags: Ehlers-Danlos in the News

PATIENT’S VOICES WANTED: European Patient Advocacy Group, EURODIS, Launches Rare Disease Survey

EURORDIS, a European non-profit and non-governmental patient-driven alliance of patient organizations, has launched a survey about the impact of rare disease on daily life. Specifically, the survey looks at the social care and coordination of care needs of people living with a rare disease and their families.

More information and the survey can be found here

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Would you like to speak to others living with EDS and HSD but can’t get to any support group meetings, events, or conferences?

Our weekly, monthly, and quarterly virtual support groups for people from all over the world are a chance to come and share your story and chat with others for support.

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