Turning the tide for rare disease

Alpha-1: best practices for testing for this and other late-onset genetic diseases

By CONTRIBUTOR

30 August 2023

Turning the tide for rare disease

Life in the slow lane: finding strength after ataxia diagnosis

By CONTRIBUTOR

23 August 2023

Science & tech

Marie Curie: the inspiring legacy of a great woman of science and our RARE inspiration

By CONTRIBUTOR

16 August 2023

RARE Ramblings

Richard’s RARE Ramblings: accommodating for rare conditions

By CONTRIBUTOR

9 August 2023

Charity & advocacy

Creld1 Warriors—bringing the scientific and parent community together

By CONTRIBUTOR

2 August 2023

A day in the life

A day in the life: graduation day for Raymond Huml’s son, Jon

By CONTRIBUTOR

25 July 2023

Charity & advocacy

Connie Montgomery’s late diagnosis with two rare diseases: factor VII deficiency and pemphigus vulgaris

By CONTRIBUTOR

19 July 2023

Industry Insights

The ABPI Code Partnership events: a step towards better partnerships?

By CONTRIBUTOR

12 July 2023

Science & tech

LifeArc announces investment of more than £100 million into rare disease research by 2030

By CONTRIBUTOR

6 July 2023

RARE caregiving

The barista and the quiltmaker: life lessons from strangers

By CONTRIBUTOR

5 July 2023

A day in the life

A day in the life: Josiah’s diagnosis with familial cold autoinflammatory syndrome

By CONTRIBUTOR

28 June 2023

Reviews

RARE Reads: Thrive Rare: Embracing The Uniqueness Within

By CONTRIBUTOR

27 June 2023

Charity & advocacy

Dee and Nadia’s journey with Kawasaki disease

By CONTRIBUTOR

21 June 2023

Charity & advocacy

Global Genes and Cure JM Foundation: expanding mental health support for the rare disease community

By CONTRIBUTOR

7 June 2023

Patient voice

Together—every step

By CONTRIBUTOR

31 May 2023

A day in the life

A day in the life: Cathy Moughton, PSPA helpline care navigator

By CONTRIBUTOR

24 May 2023

Charity & advocacy

GACI Global: circulating hope for families affected by a rare genetic disease that primarily affects the circulatory system

By CONTRIBUTOR

17 May 2023