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Connecting rare disease patients globally

Start a community for a rare disease in partnership with us.
Eva and Kristian, from Germany, two friends with Williams Syndrome. Photo courtesy of EURORDIS Photo Contest.
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ABOUT RARECONNECT

A safe, easy to use platform where rare disease patients, families and patient organizations can develop online communities and conversations across continents and languages. RareConnect partners with the world's leading rare disease patient groups to offer global online communities allowing people to connect around issues which affect them while living with a rare disease.  More information

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HOW IT WORKS

RareConnect is divided into disease specific online communities and discussion groups around topics of interest which may be disease specific or concern issues which touch on many disease areas.

FEATURES

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GET INVOLVED

Beyond signing up and becoming a member of RareConnect there are many other ways in which you or your organisation can get involved in the platform.

  • Patient Organisations

    Start a community for a rare disease in partnership with us.

    CONTACT US
  • Become a moderator

    Join our team of volunteer moderators.

    SUGGEST YOURSELF

PATIENT-LED

RareConnect is a patient-led initiative. Patient organisations partner with EURORDIS, itself an international patient organisation, to create communities and provide moderators from within their network.

EXPERIENCED MODERATORS

Each community on RareConnect is moderated by a person living with a relevant rare disease and linked to a trusted patient group. Furthermore all moderators are trained in the use of our online communities charter and supported on a daily basis by a team of community managers.

NON-FOR-PROFIT

We are a non for profit organisation whose mission is to fight against the impact of rare diseases on peoples' lives. Learn more about EURORDIS' mission here

DATA PROTECTION COMPLIANT

RareConnect has declared its activity with the French Data Protection Agency's CNiL as compliant with the European Directive on Data Protection as implemented into French legislation.

SECURE COMMUNICATION

All communication between you and RareConnect servers are encrypted using certified Secure Socket Layers (SSL) issued by Thwate. This means that even on public networks hackers cannot listen to or capture sensitive data.

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BENEFITS&TESTIMONIALS

Connect with others who understand you. Learn about research and the latest treatments. See what advocacy organizations are doing around the world. Find helpful resources and information from experts.

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EURORDIS Rare Diseases Europe

WHO WE ARE

EURORDIS, the European Organisation for Rare Diseases, is a patient-driven alliance of patient organisations and individuals active in the field of rare diseases. EURORDIS' mission is to build a strong pan-European community of patient organisations and people living with rare diseases, to be their voice at the European level, and - directly or indirectly - to fight against the impact of rare diseases on their lives.

HOW WE ARE FUNDED

Funding for the RareConnect project comes from several types of sources such as patient organisations (AFM-Téléthon), public funds (EAHC) and corporate sources. All funding supports the project as a whole and plays an essential part in launching and sustaining all participating rare disease communities.  View our funders.

BUILDING A COMMUNITY OF TRUST

RareConnect is endorsed by the following partners who have partnered with us to promote the platform to their members. We recognise and thank their efforts.

OTHER EURORDIS WEBSITES

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EURORDIS is a non-governmental patient-driven alliance of patient organisations.

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The largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiative

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An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiative