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Charity partner news
Charity partner news
Medics4RareDiseases joins forces with Bionical Emas to launch new online training
By rpender
5 April 2022
Charity partner news
Myhre Syndrome Foundation awards $150,000 in grants
By rpender
3 March 2022
Charity partner news
The urgent case for patient assistance funding
By rpender
3 February 2022
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
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