Sunday sessions

Kara LaFrance explores the gift of faith, God and connection in a time of great separation

By CONTRIBUTOR

18 December 2020

Medical

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

By CONTRIBUTOR

17 December 2020

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

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

Science & tech

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

By CONTRIBUTOR

24 November 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

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

Charity & advocacy

A race against time

By CONTRIBUTOR

18 August 2020

Charity & advocacy

The Albinism Fellowship UK and Ireland are proud to support a campaign to end discrimination within international blind sport

By CONTRIBUTOR

5 August 2020

Medical

Alan Finglas, founder of MSD Action Foundation and Saving Dylan, contemplates EU policy and the potential it has to open the gates for real change in the rare disease community

By CONTRIBUTOR

28 July 2020

Medical

Why the COVID-19 pandemic may be particularly challenging for families living with rare conditions

By CONTRIBUTOR

17 July 2020

Patient voice

Achalasia Action is shining a spotlight on a rare disease of the oesophagus: achalasia

By CONTRIBUTOR

15 July 2020

Medical

My reflections on COVID-19

By CONTRIBUTOR

10 July 2020

Charity & advocacy

“I Stay Home for RARE” financial assistance campaign launched by Living in the Light.

By CONTRIBUTOR

8 July 2020