Sunday sessions

Sunday sessions

Carlos Briceño explores the power and peace of the present moment

By CONTRIBUTOR

16 December 2020

Medical

Anavex Life Sciences is the company to learn from according to the rare disease advocacy community

By CONTRIBUTOR

16 December 2020

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

Sunday sessions

Attitude, adapt, faith and purpose; how Dan “Dry Dock” Shockley uses his positive state of mind to adapt to life as an “ostomate” and raise awareness for hereditary colorectal cancer.

By CONTRIBUTOR

4 December 2020

RARE News

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

By admin

25 November 2020

Science & tech

PTC Therapeutics highlights data on high disease burden and value of treatment across two rare diseases

By CONTRIBUTOR

24 November 2020

RARE News

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

By admin

19 November 2020

RARE News

Illuminating the path to youth employment

By admin

18 November 2020

RARE News

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

By admin

11 October 2020

Charity & advocacy

Personal circumstances lead the way to a passionate career in nephrology research

By CONTRIBUTOR

11 October 2020

Charity & advocacy

PTC Therapeutics’ 2020 STRIVE awards for Duchenne muscular dystrophy recognise four patient advocacy organisations

By CONTRIBUTOR

30 September 2020

Charity & advocacy

Scottish based liver charity PBC foundation celebrates success of its first global online event

By CONTRIBUTOR

29 September 2020

RARE News

International Ataxia Awareness Day

By admin

24 September 2020

Charity & advocacy

CMT Research Foundation fighting to shorten the time to diagnosis and put CMT on the radar of pharma

By CONTRIBUTOR

24 September 2020

RARE News

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

By admin

16 September 2020

RARE 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 admin

10 September 2020

RARE News

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

By admin

1 September 2020

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