Press releases

Press releases

Rare Community Network and Medics4RareDisease platform the underrepresented voices of the rare disease community for NHS England & Improvement meeting

By rpender

26 October 2021

Press releases

Research Tools Matching Grant Program now accepting applications!

By rpender

25 October 2021

Press releases

Coming Soon: Digital Spotlight with Prevail Therapeutics on Frontotemporal Dementia

By rpender

22 October 2021

Press releases

NICE recommends BioCryst’s ORLADEYO®, an oral, once-daily therapy, to prevent recurrent attacks of hereditary angioedema in patients 12 years and older

By admin

28 September 2021

Medical

Zebras do exist: the diagnostic odyssey of rare disease patients

By rpender

13 July 2021

Press releases

Reforming Rare Diseases: Why Genetic Alliance UK and Alexion are calling for urgent change to improve patient care

By rpender

9 December 2020

Press releases

People with rare neurological conditions need a much better deal says new Neurological Alliance report

By rpender

25 November 2020

Press releases

Illuminating the path to youth employment

By rpender

18 November 2020

Press releases

Leading NIH expert on GNE myopathy joins the Neuromuscular Disease Foundation (NDF)

By rpender

1 September 2020

Press releases

RARE Revolution Magazine and TREND Community are proud to announce their new partnership, working together to power up the voices of the youth rare disease community

By rpender

24 June 2020

Press releases

Launching RARE Youth Revolution platform

By rpender

18 June 2020

Press releases

A global gateway to a lasting legacy

By rpender

17 June 2020

Press releases

Genomenon released genomic landscape for ectodermal dysplasias for Rare Disease Week

By rpender

5 March 2020