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Connecting rare disease patients globally

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

  • 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.

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Features

RareConnect offers it’s users a unique experience due to the platforms disease specific online communities around topics of interest which may be disease specific or concern issues which touch on many disease areas.


  • Communities

    RareConnect includes disease-specific online communities that enable people living with rare diseases to meet, share stories and learn from each other. Communities are created in partnership with patient groups who bring resources such as moderators, relationships with specialists and validated information. Find a community above using the search box or visit our list of communities.

  • Translation

    RareConnect helps people who live with rare diseases from around the world to connect by providing different translation services. We provide an integrated machine-translation service but also an additional human translation service to ensure quality communication between members of the network.

  • Networking

    Connect with other people living with rare diseases in order to share experiences, find support, ask questions and gain access to a rich network of supportive patient organisations.

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.


  • Find a community or a discussion group

  • Join a community or a conversation

  • Share your story or ask a question

  • Meet others and connect with them

About Us

Hosted by trusted patient advocates, RareConnect is a place where rare disease patients can connect with others globally. RareConnect is a safe environment where privacy is respected and where trusted information is shared via real patient representatives.

Hosted by trusted patient advocates, RareConnect is a place where rare disease patients can connect with others globally. RareConnect is a safe environment where privacy is respected and where trusted information is shared via real patient representatives.

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.

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.

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-profit

The RareConnect team is made up of employees from the non-profit organizations: EURORDIS- Rare Diseases Europe and The Hospital for Sick Children. Funding for RareConnect comes from grants and corporate sponsorship. For more information about corporate sponsorship through EURORDIS, please visit eurordis.org/international.

Non-profit

The RareConnect team is made up of employees from the non-profit organizations: EURORDIS- Rare Diseases Europe and The Hospital for Sick Children. Funding for RareConnect comes from grants and corporate sponsorship. For more information about corporate sponsorship through EURORDIS, please visit eurordis.org/international.

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.

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). This means that even on public networks hackers cannot listen to or capture sensitive data.

Secure communication

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

Get Involved

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


  • Patient Organizations

    Start a community for a rare disease in partnership with us

    Join now
  • Become a Moderator

    Join our team of volunteer moderators

    Contact us
  • Be a volunteer translator

    Help us translate people’s stories in any language

    Contact us

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.