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

"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 because of ...

23 Mar 2022 at 16:33

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

The Northern Ireland Rare Disease Partnership celebrate ten years of hard work and look to the next ten years

The Northern Ireland Rare Disease Partnership (NIRDP) welcomed colleagues and friends, past and present, as they celebrated 10 years of hard work as an accredited charity. They reflected on the last ten years and how far they have come- ...

01 Dec 2022 at 17:33

Home

Longford school showing their colours for Rare Disease Day

Tomorrow building's across the globe will light up in blue, green and pink to bring attention to the plight of millions of rare disease sufferers across the world. the pupils of one Longford school will also do their part. Rare Disease ...

27 Feb 2023 at 20:33

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

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 ...

24 Mar 2022 at 18:33

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

Home

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

Ireland

Only 13% of people aware of rare disease could correctly identify condition

Only 13% of people who claim to have an awareness of the term “rare disease” could correctly identify a condition, a survey has revealed. The results of the survey reveal a disparity between awareness ...

07 Feb 2024 at 15:16

Years
2025

Related keywords
Derry
Mark H Durkan
Rare Disease
SDLP
Northern Ireland Rare Disease Partnership

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