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admin
RARE News
What is HH? Carrie Fulcher tells her story of finally discovering that she had a hypothalamic hamartoma
By admin
30 October 2021
RARE News
Rare Community Network and Medics4RareDisease platform the underrepresented voices of the rare disease community for NHS England & Improvement meeting
By admin
26 October 2021
RARE News
Research Tools Matching Grant Program now accepting applications!
By admin
25 October 2021
Weblinks and references
Digital health revolution and its transformative potential for rare diseases – WEBLINKS AND REFERENCES
By admin
13 October 2021
RARE News
BBS UK participates in BBS global day to support individuals affected by Bardet Biedl syndrome
By admin
25 September 2021
RARE News
Niemann-Pick UK are set to launch ‘Invisible Me’ campaign and short film ‘Invisible Manners’
By admin
14 September 2021
RARE News
Michael McGrath – CEO of The Muscle Help Foundation discusses academic research with University of Hertfordshire
By admin
13 August 2021
RARE News
Visual Snow Initiative: the charity on a mission to cure visual snow syndrome
By admin
12 July 2021
RARE News
All change at Genetic Disorders UK
By admin
2 June 2021
RARE News
It’s NOT Parkinson’s. Progressive supranuclear palsy and corticobasal degeneration
By admin
28 May 2021
RARE News
Non-profit partnership with Illumina aims to reduce the diagnostic odyssey for individuals living with a rare epilepsy
By admin
12 April 2021
RARE News
ShieldUs call to action for our learning disabilities community’s right to life
By admin
1 April 2021
RARE News
Research grant of over 2 million Euro offers new hope for children with rare condition Schinzel-Giedion syndrome
By admin
26 January 2021
Weblinks and references
References and signposting weblinks for: RARE Patient Partners edition 014
By admin
11 January 2021
RARE News
Reforming Rare Diseases: Why Genetic Alliance UK and Alexion are calling for urgent change to improve patient care
By admin
9 December 2020
RARE News
People with rare neurological conditions need a much better deal says new Neurological Alliance report
By admin
25 November 2020
RARE News
FSD call for innovative research projects in advanced therapies for Dravet syndrome
By admin
19 November 2020
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