All the updated news related to Rare Disease

All the news related to Rare Disease 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

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- including ...

01 Dec 2022 at 17:33

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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 Day is a ...

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 treat ...

11 Feb 2022 at 18:33

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 17 years ...

24 Mar 2022 at 18:33

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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 16:33

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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

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 marking the annual ...

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. Over 300,000 ...

29 Feb 2024 at 20:33

Derry News

Derry support group seeks to help those living with a rare condition

Members of the North West Rare Disease Support Group are meeting in the Holywell Trust, Derry on Friday 9 June from 2pm until 4pm. The group is supported by Northern Ireland Rare Disease Partnership (NIRDP), the ...

02 Jun 2023 at 16:33

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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 urgent ...

19 Apr 2024 at 22:33

Local News

'Get Rare Aware': Carlow Oireachtas members warned about rare diseases

Rare Diseases Ireland (RDI) have launched their 'Get Rare Aware' campaign, which is highlighting the challenges facing people living with rare diseases in Ireland, including in Carlow. ‘Get Rare Aware’ ...

07 Jul 2023 at 20:33

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

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