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The voice of 30 million people affected by rare diseases throughout Europe

EURORDIS is a non-governmental patient-driven alliance of patient organisations representing 633 rare disease patient organisations in 59 countries. They are the voice of 30 million people affected by rare diseases throughout Europe.

ENERCA has traditionally collaborated with the project “European Network of Rare Disease Help lines” created by EURORDIS in September 2006. The project is aiming at better serving the needs of callers by sharing resources, best practices and the common tools of its members. One of the main objectives is the possibility of the establishment of a single European number for information about rare diseases across Europe.

ENERCA has also collaborated in the dissemination of the activities organized by Eurordis for the Anual Rare Diseases Day. The dissemination has been mainly done through the ENERCA website by posting news, including a banner on website home and selecting relevant events to be displayed in the ENERCA Agenda. All this information was included on the corresponding ENERCA newsletter. The website also reflected other EURORDIS initiatives such as a questionnaire about difficulties accessing treatment.

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