Patient voice

Patient voice

Why mental health is a core part of the rare disease experience: listening to the patient voice

By CONTRIBUTOR

11 March 2026

Patient voice

Two paths, one childhood: raising twins when one has a rare muscular dystrophy

By CONTRIBUTOR

11 March 2026

Patient voice

The journey, not the destination

By CONTRIBUTOR

4 March 2026

Patient voice

Living with anhidrosis taught me resilience, purpose and the power of faith to overcome adversity

By CONTRIBUTOR

2 March 2026

Patient voice

The mountain still calls

By CONTRIBUTOR

16 February 2026

Patient voice

Living rare: finding my voice with diffuse systemic scleroderma

By CONTRIBUTOR

11 February 2026

Patient voice

Lessons in living with a rare disease: what living rare has taught me

By CONTRIBUTOR

4 February 2026

Patient voice

Living and advocating through a complex medical journey: erythromelalgia, visual snow syndrome and autoimmune dysregulation

By CONTRIBUTOR

28 January 2026

Patient voice

24 Days of RARE Inspirations nominations

By Joe Rumney, RARE Revolution

24 December 2025

Patient voice

Reframing the future – news from the Huntington’s community

By CONTRIBUTOR

1 December 2025

Patient voice

Vitiligo: my changing sense of self

By Joe Rumney, RARE Revolution

26 November 2025

Patient voice

My journey with congenital erythropoietic porphyria (CEP) and the light I found through art

By CONTRIBUTOR

14 October 2025

Patient voice

My unexpected journey: life with a rare liver tumour

By CONTRIBUTOR

24 September 2025

Patient voice

Never give up

By CONTRIBUTOR

3 September 2025

Patient voice

Epilepsy seizure alert dog is credited with owner being seizure-free for five years

By CONTRIBUTOR

27 August 2025

Patient voice

Living with acrodysostosis type 1: Jordan’s story

By CONTRIBUTOR

11 August 2025

Patient voice

Mila’s journey with CCHS

By CONTRIBUTOR

6 August 2025

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