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Patient voice
Patient voice
Raising a child with Hirschsprung’s disease
By admin
28 February 2024
Patient voice
Love isn’t rare—Ken To’s journey with Huntington’s disease
By admin
11 February 2024
Patient voice
If you want to make God laugh, tell him about your plans
By admin
31 January 2024
Patient voice
Fostering a positive mind and body
By admin
1 November 2023
Patient voice
Joshua Ruff: a journey of transformation through faith, family and farming
By admin
4 October 2023
Patient voice
Living with cold agglutinin disease: Jörg’s story
By admin
25 September 2023
Patient voice
The physical, mental, and emotional toll of Charcot-Marie-Tooth disease: Joe Hogan’s story
By admin
13 September 2023
Patient voice
Together—every step
By admin
31 May 2023
Patient voice
Generalised arterial calcification of infancy (GACI): Ruben’s story
By admin
17 May 2023
Patient voice
Raymond: A “ray of sunshine” living with VAMP2
By admin
21 April 2023
Patient voice
Going great lengths: a mother and son’s journey with fibular hemimelia
By admin
5 April 2023
Patient voice
Wings of Fire: escaping the shadows of a rare disease that was undiagnosed for 25 years
By admin
11 January 2023
Patient voice
Passing on a rare disease: a RARE mother’s journey from ‘blameless guilt’ to joy
By admin
5 September 2022
Patient voice
Making peace with numbers
By admin
6 June 2022
Patient voice
A story of heartbreak and hope: Juju’s journey with CLN2 Batten disease
By admin
9 May 2022
Patient voice
The rare and wonderful opportunity of parenting a child with a RARE condition
By admin
29 April 2022
Patient voice
Redefine: Max Feinstein’s concept album inspired by his life with haemophilia
By admin
4 April 2022
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