NEW! Research information

We’ve just added information in our Research section of the Knowledge Base regards the Italian r(20) collaborative group who are conducting ongoing research into r(20) syndrome. They are currently seeking funding for their latest project.

Also you can now search PubMed for the latest research articles published via our new link (again see the Research section of the Knowledge Base)

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Latest News and Research

Like most people I wanted to volunteer because of a desire to give back to the community and do something for the greater good.
Research has shown that patients and carers who live with a rare disease experience a negative impact on wellbeing and mental health.