r(20) Families Conference Highlights video

Check out our highlights video from our Families Conference here

20 families affected by r(20) come together for a 1st ever family conference

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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.