Charity partner news

Charity partner news

Cambridge charity launches crowdfunding campaign to raise £30,000 for the first global AKU registry.

By rpender

9 November 2021

Charity partner news

What is HH? Carrie Fulcher tells her story of finally discovering that she had a hypothalamic hamartoma

By rpender

30 October 2021

Charity partner news

BBS UK participates in BBS global day to support individuals affected by Bardet Biedl syndrome

By admin

25 September 2021

Charity partner news

Niemann-Pick UK are set to launch ‘Invisible Me’ campaign and short film ‘Invisible Manners’

By rpender

14 September 2021

Charity partner news

Michael McGrath – CEO of The Muscle Help Foundation discusses academic research with University of Hertfordshire

By rpender

13 August 2021

Charity partner news

Visual Snow Initiative: the charity on a mission to cure visual snow syndrome

By rpender

12 July 2021

Charity partner news

All change at Genetic Disorders UK

By rpender

2 June 2021

Charity partner news

It’s NOT Parkinson’s. Progressive supranuclear palsy and corticobasal degeneration

By rpender

28 May 2021

Charity partner news

Non-profit partnership with Illumina aims to reduce the diagnostic odyssey for individuals living with a rare epilepsy

By rpender

12 April 2021

Charity partner news

ShieldUs call to action for our learning disabilities community’s right to life

By rpender

1 April 2021

Charity partner news

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

By rpender

26 January 2021

Charity partner news

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

By rpender

19 November 2020

Charity partner news

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

By rpender

11 October 2020

Charity partner news

International Ataxia Awareness Day

By rpender

24 September 2020

Charity partner news

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

By rpender

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 rpender

10 September 2020

Charity partner news

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

By rpender

11 August 2020