Patient voice

Patient voice

Together—every step

By CONTRIBUTOR

31 May 2023

Patient voice

Generalised arterial calcification of infancy (GACI): Ruben’s story

By CONTRIBUTOR

17 May 2023

Patient voice

Raymond: A “ray of sunshine” living with VAMP2

By CONTRIBUTOR

21 April 2023

Patient voice

Going great lengths: a mother and son’s journey with fibular hemimelia

By CONTRIBUTOR

5 April 2023

Patient voice

Wings of Fire: escaping the shadows of a rare disease that was undiagnosed for 25 years

By CONTRIBUTOR

11 January 2023

Patient voice

Passing on a rare disease: a RARE mother’s journey from ‘blameless guilt’ to joy

By CONTRIBUTOR

5 September 2022

Patient voice

Making peace with numbers

By CONTRIBUTOR

6 June 2022

Patient voice

A story of heartbreak and hope: Juju’s journey with CLN2 Batten disease

By CONTRIBUTOR

9 May 2022

Patient voice

The rare and wonderful opportunity of parenting a child with a RARE condition

By CONTRIBUTOR

29 April 2022

Patient voice

Redefine: Max Feinstein’s concept album inspired by his life with haemophilia

By CONTRIBUTOR

4 April 2022

Patient voice

MNGIE: Verity Grainger’s mission to raise funds for a life-saving therapy

By CONTRIBUTOR

30 March 2022

Patient voice

Cavernomas—a patient’s efforts to understand the possible systemic implications of a defect in the KRIT1 (CCM1) gene

By CONTRIBUTOR

14 February 2022

Patient voice

The global disability community and the DE&I discussion: a match that needs to be made

By CONTRIBUTOR

9 February 2022

Patient voice

Everyone, on the bus!

By CONTRIBUTOR

28 January 2022

Patient voice

Caring for his children with VICI syndrome: Muzaffar Anjum’s story

By CONTRIBUTOR

8 December 2021

Patient voice

“Do you hear me?”

By CONTRIBUTOR

3 December 2021

Patient voice

My scars tell a story

By CONTRIBUTOR

24 November 2021

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