Medical

Medical

UK’s largest ever NHS rare disease diagnosis programme launched by Mendelian and Modality NHS Partnership

By Rebecca Pender

17 December 2020

Sunday sessions

Carlos Briceño explores the power and peace of the present moment

By Rebecca Pender

16 December 2020

Medical

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

By Rebecca Pender

16 December 2020

Press releases

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

By Rebecca Pender

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 Rebecca Pender

4 December 2020

Press releases

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

By Rebecca Pender

25 November 2020

Science & tech

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

By Rebecca Pender

24 November 2020

Charity partner news

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

By Rebecca Pender

19 November 2020

Press releases

Illuminating the path to youth employment

By Rebecca Pender

18 November 2020

Charity partner news

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

By Rebecca Pender

11 October 2020

Charity & advocacy

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

By Rebecca Pender

11 October 2020

Charity & advocacy

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

By Rebecca Pender

30 September 2020

Charity & advocacy

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

By Rebecca Pender

29 September 2020

Charity partner news

International Ataxia Awareness Day

By Rebecca Pender

24 September 2020

Charity & advocacy

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

By Rebecca Pender

24 September 2020

Charity partner news

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

By Rebecca Pender

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 Rebecca Pender

10 September 2020

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