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Patient voice
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
Patient voice
Hannah, Me and NCSE
By CONTRIBUTOR
10 November 2021
Patient voice
Cavernous malformation and the Breaking Barriers Initiative
By CONTRIBUTOR
5 November 2021
Patient voice
Please don’t call my son a patient
By CONTRIBUTOR
3 November 2021
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