All the updated news related to rare diseases

All the news related to rare diseases 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

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 awareness of Rare Disease Day (Tuesday, ...

19 Mar 2023 at 09:33

Home

Rare genetic blood disorder means Oran cannot go out in natural light

Imagine having to sit in complete darkness for a week, to recover from the severe effects of a genetic condition, for which you are being denied an available treatment. That is the desperate situation facing Oran Carlin (15) ...

25 Jul 2023 at 12:33

Home

Derry woman living with rare condition working to raise awareness

Derry woman, Rosaline Callaghan, was diagnosed in 2019, with the rare condition known as hereditary amyloidosis. It is a condition geographically specific to North West Donegal. Rosaline chats to Derry News about her ...

27 Jan 2023 at 16:33

Home

Funding for implementation of new National Rare Disease Strategy must be ringfenced to support people with rare diseases in Kildare — Rare Diseases Ireland

Sustainable funding must be ringfenced to ensure the new National Rare Disease Strategy will be implemented to support people with rare diseases in Kildare. That’s according to Rare Diseases Ireland, who were ...

05 Mar 2024 at 17:33

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Funding for implementation of new National Rare Disease Strategy must be ringfenced to support people with rare diseases in Kildare — Rare Diseases Ireland

05 Mar 2024 at 17:33

Local News

The Rock of Cashel is lit up tonight in support of Rare Ireland Family Support Network

The Rock of Cashel joins many landmarks across the country lighting up tonight in support of Rare Ireland Family Support Network. The 'Rock' is lit in an illuminating blue and pink for Rare Disease Day. ...

29 Feb 2024 at 20:33

Home

New campaign calls on politicians in Carlow to expand Ireland’s newborn screening programme

Rare Diseases Ireland (RDI) this week launched its 2024 Get Rare Aware campaign to bring together politicians, medical experts and people living with rare diseases, including in Carlow, to call for the ...

19 Apr 2024 at 22:33

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