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Dunblane teenager gives Holyrood speech on life with rare genetic condition

Dunblane teenager gives Holyrood speech on life with rare genetic condition
dailyrecord.co.uk - get the latest breaking news, showbiz & celebrity photos, sport news & rumours, viral videos and top stories from dailyrecord.co.uk Daily Mail and Mail on Sunday newspapers.

United Kingdom , City Of , Glasgow City , Julia Shanks , Dunblane High School , Institute Of Genetics , Scottish Parliament , Genetic Alliance United Kingdom , Office For Rare Conditions Glasgow , Undiagnosed Children , Bob Doris , Primary Ciliary Dyskinesia , Cystic Fibrosis , Royal Brompton London , Alliance United Kingdom , Natalie Frankish , Rare Disease Action Plan , Undiagnosed Conditions , Syndromes Without , Rare Conditions ,

The mental toll of living with a rare disease

Angelina is a fierce eight-year-old. But beneath her radiant smile and infectious laughter lurks a young girl fighting a daily battle. Angelina struggles to walk, talk, eat, and control her emotions. She can't sleep because her brain won't let her rest. ....

City Of , United Kingdom , United States , Louise Healy , Amy Hunter , Giovi Moschoudis , Research At Genetic Alliance United Kingdom , Genetic Alliance United Kingdom , Angelina Cask Neurological Research Foundation , Rare Voices , Torres Strait Islander , Syndromes Without ,

Disabled woman, 19, told she isn't allowed in pub without a parent

Kayce Jackson has SWAN (Syndromes Without a Name), and left the Crown and Cushion pub in tears earlier this month. ....

Krystle Jackson , Kayce Jackson , Syndromes Without ,

The ultra-rapid genetic tests giving parents a diagnosis for children's mystery conditions

Australian researchers have been combing through 3 billion letters of genetic code to find single spelling mistakes that are causing mystery conditions. ....

New South Wales , Cody Bailey , Nick Moir , Gemma Mcnamara , Heather Renton , Westmead Children , Australian Genomics , Syndromes Without ,

The woman with an illness so rare it does not have a name

Debbie Schwartz, 47, from Cardiff, spent her childhood visiting doctors. She is now one of the first patients at Britain s first commissioned clinic for people suffering with syndromes without a name ....

United States , United Kingdom , City Of , Debbie Schwartz , Graham Shortland , University Hospital Of Wales , Rare Diseases Implementation Group , Syndromes Without , University Hospital , Mitochondrial Disease , Welsh Government , Iolo Doull ,