Our latest Newsletter has landed!

Read our latest Newsletter jam-packed with information on our research projects and other activities. Printed copies have been posted to all members and supporters on our mailing list.

Newsletter #8

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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.