RARE News

RARE News

Jeff D’Angelo: founder of CHAMP 1 research foundation tells his RARE story

By admin

11 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

Rare insights

Team reflections on working through a global pandemic

By admin

20 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

Charity & advocacy

Kawasaki disease UK

By CONTRIBUTOR

1 July 2020

Charity & advocacy

Global Commission progresses technology health pilots to accelerate time to diagnosis for children with a rare disease

By CONTRIBUTOR

29 June 2020

Patient voice

National CMV Foundation – Amanda’s story

By CONTRIBUTOR

24 June 2020

RARE News

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 admin

24 June 2020

RARE News

Launching RARE Youth Revolution platform

By admin

18 June 2020

Charity & advocacy

Nystagmus awareness day – 20 June 2020

By CONTRIBUTOR

17 June 2020

RARE News

A global gateway to a lasting legacy

By admin

17 June 2020

Medical

Danny’s Dose changing rules and saving lives

By CONTRIBUTOR

12 June 2020

Charity & advocacy

Welcome new boost for mums and dads of young children with albinism

By CONTRIBUTOR

11 June 2020

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