Charity & advocacy

A Rare Find: upcoming comedy short wants to create conversation around newborn screening

By CONTRIBUTOR

27 September 2023

Reviews

RARE Reads: The Champ and the Chump

By CONTRIBUTOR

27 September 2023

Industry Insights

Living well with a rare disease: are we really supporting our community to achieve this?

By CONTRIBUTOR

25 September 2023

Patient voice

Living with cold agglutinin disease: Jörg’s story

By CONTRIBUTOR

25 September 2023

Charity & advocacy

Mitochondrial disease awareness week: let’s move the needle towards effective treatments and cures

By CONTRIBUTOR

20 September 2023

Reviews

RARE Reads: The CMMRD book: a mismatch memoir and guide

By CONTRIBUTOR

20 September 2023

A day in the life

A day in the life: a glimpse into my life living with scleroderma

By CONTRIBUTOR

15 September 2023

Patient voice

The physical, mental, and emotional toll of Charcot-Marie-Tooth disease: Joe Hogan’s story

By CONTRIBUTOR

13 September 2023

Medical

Transitioning successfully from paediatric to adult care in Duchenne muscular dystrophy

By CONTRIBUTOR

6 September 2023

Reviews

RARE Reads: Helix of Love

By CONTRIBUTOR

30 August 2023

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