All the updated news related to Northern Ireland Rare Disease Partnership

All the news related to Northern Ireland Rare Disease Partnership 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 15:54

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 19:35

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 treat ...

11 Feb 2022 at 18:01

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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 condition, the ...

27 Jan 2023 at 16:00

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

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