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The rare disease meeting point

Find your community, support and research for your condition

We connect patients, families, associations, healthcare professionals and researchers in a shared, safe space for every condition.

Join the community Explore all conditions
200k+registered profiles
168k+condition map connections
1099conditions with communities
16languages

Start with your goal

What would help you today?

Go directly to people, knowledge and opportunities around your condition.

I want to feel less alone

Find people living with the same condition, ask questions and share experiences.

Find my community

I want to learn from experience

Explore community-reported statistics, stories and quality-of-life information.

Explore community data

I want to follow research

Discover researchers and ways to bring the patient perspective closer to science.

Explore research

A home for every condition

From a map to a living disease hub

Each condition can bring together what the community knows, the help that exists and the research that is moving forward.

  • One clear place instead of scattered conversations and resources.
  • Community experience alongside professional and research pathways.
  • A space that grows whenever someone contributes.
Find my disease hub

Everyone has a role

Turn isolated knowledge into collective help

Choose how you want to participate. Every useful contribution strengthens a community.

Patients and families

Connect, ask, share only what you choose and help others feel understood.

Join my condition

Associations

Make your resources visible, welcome new families and strengthen your community.

Add my association

Healthcare professionals

Share your area of expertise and help people find the right care pathway.

Participate as a professional

Researchers

Make your work discoverable and bring real community priorities closer to research.

Participate as a researcher

Simple from the first visit

Three steps to find useful help

  1. 1

    Search your condition

    Use a name, acronym or related term to find its space.

  2. 2

    Explore the hub

    See its community, shared experience, support network and research.

  3. 3

    Join and contribute

    Choose your role, control what you share and make the hub more useful.

Trust and context

Knowing the source is part of being well informed

Patient experiences, community conversations and aggregated data must be read in context. They are not a diagnosis and do not replace medical advice. See how content is created and how personal information is handled before you participate.

How we create content Privacy policy Mission and team

No one should navigate a rare disease alone

Find your people, bring what you know and help build a stronger community around your condition.

Join the community Tell us about a missing condition