Charity partner news

Charity partner news

Research grant of over 2 million Euro offers new hope for children with rare condition Schinzel-Giedion syndrome

By Rebecca Pender

26 January 2021

Charity partner news

FSD call for innovative research projects in advanced therapies for Dravet syndrome

By Rebecca Pender

19 November 2020

Charity partner news

Ground-breaking patient-led AKU study published in the Lancet

By Rebecca Pender

11 October 2020

Charity partner news

International Ataxia Awareness Day

By Rebecca Pender

24 September 2020

Charity partner news

The yellow front door, the beach hut & those patch houseplants!

By Rebecca Pender

16 September 2020

Charity partner news

Bardet-Biedl Syndrome UK (BBS UK) publish booklet supporting children and young people with Bardet-Biedl Syndrome in learning environments, across the UK

By Rebecca Pender

10 September 2020

Charity partner news

Jeff D’Angelo: founder of CHAMP 1 research foundation tells his RARE story

By Rebecca Pender

11 August 2020

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