All the updated news related to rare

All the news related to rare updated in real time

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Derry News

Derry Girl's fight with 22q, a rare disease that impacts every aspect of her life

Rebecca Gleed spent the first 17 years of her life unaware of the condition she was living with. She was born with a ventricular septal defect (VSD) and had heart surgery at 17 months old. Rebecca was then finally diagnosed at 17 years old with ...

24 Mar 2022 at 18:33

Derry News

"Rare doesn't mean rare, this affects thousands of people"

Mayor Warke welcomed the Northern Ireland Rare Disease Partnership to the Guildhall as they celebrated 10 years of hard work and commitment to those living with rare diseases. Rhoda Walker, Chair of NIRDP, described the charity as a "small ...

15 Mar 2022 at 20:33

Derry News

"Looking at the bigger picture rare diseases are not rare; 110,000 people in the North"

SDLP MLA and Chair of the recently established APG on Rare Disease, Mark H Durkan, has welcomed the launch of the Rare Disease Action Plan, a 14 step framework which would ensure individuals living with rare diseases are not disadvantaged ...

23 Mar 2022 at 16:33

Derry News

Derry mother fighting for baby son's illness to be recognised at Stormont

Baby Lewis, born July 2020, has lived his whole life with a rare condition currently not recognised as a rare disease. Jennifer, Lewis' mother, said she has found that many consultants in Northern Ireland do not know the best way to ...

11 Feb 2022 at 18:33

Derry baby with 1 in 15 million condition receives donation from local fundraiser organised by bereaved family

Local News

Derry baby with 1 in 5 million condition receives thousands donated from local fundraiser organised by bereaved family

Martin Gallagher was just 25 years old when he was struck by a drunk driver in 2009. He was found dead on Halloween night after being struck in a hit and run. Martin was an avid marathon runner and so in his memory, Foyle Valley ...

15 Dec 2022 at 15:33

Horse Racing

Conditions key to Rare Edition’s Haydock hopes

Charlie Longsdon will be keeping a keen eye on conditions at Haydock – with Rare Edition set to be rerouted to Huntingdon if the ground on Merseyside proves too testing for his Supreme Novices’ Hurdle contender. The ...

16 Jan 2023 at 13:31

Rare vulnerable bird species sees record year for breeding, RSPB says

Conservationists are celebrating a record year for a rare and vulnerable breeding bird species in the UK. The Royal Society for the Protection of Birds (RSPB) said the black-necked grebe saw a surge in the number ...

27 Mar 2024 at 14:15

National News

Irish goat breed named as native and rare after extensive DNA profiling

A breed of goat has been recognised by the Department of Agriculture, Food and the Marine (DAFM) as native and rare following extensive DNA profiling. The Old Irish Goat breed - which arrived in Ireland during ...

12 Jun 2022 at 17:33

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 ...

11 May 2022 at 08:25

Home

Redress schemes based on 'guesswork'

The 90/10 mica redress scheme and its proposed replacement, which is coming before Cabinet on May 31, apparently without pre legislative scrutiny, are based on “guesswork”. They cannot and will not address ...

25 May 2022 at 09:33

Local News

Redress schemes based on 'guesswork'

25 May 2022 at 09:33

Longfordleader

Longford pupils show their colours on Rare Disease Day

Above: The pupils of St Matthew's National School, Ballymahon sending out the message 'We Support Rare Disease Day' during a recent non-uniform day at the school to highlight and generate ...

19 Mar 2023 at 09:33

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