All the updated news related to rare condition

All the news related to rare condition updated in real time

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Girl born with no eyes ‘has changed our lives for the better’, say parents

The parents of a one-year-old girl born with a rare condition that means she has no eyes have said their daughter “has changed our lives for the better” and helped them “appreciate life”. Laura and John Duffy-Moss, from York, told the PA news agency ...

04 Mar 2024 at 14:09

Health

Dad whose incurable genetic condition causes tumours to grow on nerves and skin and affects two of his children fears no one has heard of it

An account manager with an incurable genetic condition causing tumours to grow on nerves and skin fears most people have never heard of the malady which also affects two of his three children, despite there being 25,000 cases in the UK. Mike Bird, ...

11 May 2022 at 08:25

Health

Paralysed musician hopes to score Disney film with her tongue after spinal cord looked like ‘acid had been poured on it’

A quadriplegic musician whose rare condition caused her spinal cord to look like “acid had been poured” on it now composes music using her tongue and dreams of scoring a film for Disney. In December 2014, Grace Fisher, now 26, who lives in Santa ...

04 Sept 2024 at 06:39

Health

Teen with rare condition that means she is missing part of her arm, hand and oesophagus wins prestigious education award

A teenager who is missing part of her left arm, hand and oesophagus, and vomited “violently” for at least seven days every month until the age of 12, is studying to pursue a career working with animals after winning a prestigious national ...

08 Apr 2024 at 06:30

Health

Dad to cycle nearly 1,000 miles on tandem bike in lab coat to fund research into treatment for kids’ ultra-rare disease

A father will cycle nearly 1,000 miles on a tandem bike wearing a lab coat to fund research into treatments for his two children who have an ultra-rare condition which affects just 70 people worldwide. Mel Dixon, 45, and her husband ...

13 Sept 2024 at 11:50

South Donegal

Maria McCabe to donate sales of children's book to thank Cian’s Kennels

A kindhearted Donegal Town woman will be giving all of the proceeds of a new book to charity. Maria McCabe (Taylor) from the old Laghey Road, has written and illustrated a children’s book called Paddy's Mission Under Melvin and is ...

13 Dec 2023 at 14:33

Health

Woman bullied for rare condition making her one of ’40 reported cases worldwide’ says scaly skin is ‘cool and unique’

A young woman with an extremely rare scaly skin condition which makes her one of “40 reported cases worldwide” has said her differences help her see how “beautiful” the world is. Nathalie Richert, 25, from Kivik in Sweden, said ...

15 Jul 2025 at 13:25

Family

Mum whose son has same rare ‘devastating’ SMA condition as singer Jesy Nelson’s twins wants her to know ‘there is hope’

A mother whose son has the same rare neuromuscular condition as ex-Little Mix singer Jesy Nelson’s twins has said she wants her to know “there is hope”. Sophie and Aden Cooke’s son Sid, now four, from Yalding in Kent, was ...

09 Jan 2026 at 06:55

Years
2026

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