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 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

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 16:49

Derry News

Derry group organising a series of events as part of Rare Disease Day

A Derry group is organising a series of events as part of Rare Disease Day. Every year on February 28, Rare Disease Day takes place across the world to raise awareness about rare diseases. This year local people from Derry are being ...

23 Feb 2021 at 08:45

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 ...

11 Feb 2022 at 18:01

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 15:07

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 18:22

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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 ...

27 Jan 2023 at 16:00

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 15:52

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 ...

25 Jul 2023 at 12:09

Years
2025

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

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