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#rare disease

# rare-disease - Sunday 24 February, 2019

'When we tried to explain PKU to people in the past, they'd say we were mad, things are different now' Low Protein Diet

'When we tried to explain PKU to people in the past, they'd say we were mad, things are different now'

Feb 24th 2019, 7:00 PM 33,482 Views 1 Comment

People with this rare genetic condition need to maintain strict low-protein diets.

# rare-disease - Friday 20 October, 2017

'If I stay in Ireland, my daughter could be slipping through my fingers' Pku

'If I stay in Ireland, my daughter could be slipping through my fingers'

Oct 20th 2017, 12:05 AM 29,281 Views 6 Comments

People with PKU, a rare genetic disorder, are fighting for access to medication.

# rare-disease - Saturday 5 August, 2017

Doctor who treated Charlie Gard says the baby's life became 'a soap opera' Rare Disease

Doctor who treated Charlie Gard says the baby's life became 'a soap opera'

Aug 5th 2017, 8:22 AM 18,114 Views 54 Comments

“I loved this child to bits. But it got to the point where there was nothing more we could do.”

# rare-disease - Thursday 13 July, 2017

'If he was suffering we wouldn't be up here fighting': New evidence in Charlie Gard case Rare Disease

'If he was suffering we wouldn't be up here fighting': New evidence in Charlie Gard case

Jul 13th 2017, 7:46 PM 26,303 Views 40 Comments

Proceedings grew heated today, with Gard’s parents storming out of the courtroom at one point.

# rare-disease - Sunday 9 April, 2017

'I feel like a ticking time bomb' - Dublin woman appeals for help getting her life back Appeal

'I feel like a ticking time bomb' - Dublin woman appeals for help getting her life back

Apr 9th 2017, 8:00 AM 71,545 Views 3 Comments

Mags Forkan suffers from Ehlers-Danlos Syndrome.

# rare-disease - Tuesday 28 February, 2017

'Nobody knows what it is': The rare genetic condition that means people must avoid protein Pku

'Nobody knows what it is': The rare genetic condition that means people must avoid protein

Feb 28th 2017, 6:20 AM 39,269 Views 7 Comments

Despite being rare, Ireland has one of the highest rates of PKU in Europe.

# rare-disease - Saturday 7 January, 2017

'If she gets another chest infection she probably won't make it, that’s the reality' SPINAL MUSCULAR ATROPHY

'If she gets another chest infection she probably won't make it, that’s the reality'

Jan 7th 2017, 7:25 AM 31,115 Views 16 Comments

Nellie and Lara are the only two children in Ireland with Spinal Muscular Atrophy Type 1 – an extremely rare genetic condition.

# rare-disease - Saturday 8 October, 2016

This woman is fighting for her life and access to a medication that could help Degos Disease

This woman is fighting for her life and access to a medication that could help

Oct 8th 2016, 7:00 PM 18,746 Views 8 Comments

Charlotte Connolly is thought to be the only person in Ireland with Degos disease.

# rare-disease - Saturday 11 July, 2015

Do you suffer with psoriasis? A new drug treatment could offer you great news Health

Do you suffer with psoriasis? A new drug treatment could offer you great news

Jul 11th 2015, 9:15 AM 48,082 Views 152 Comments

Clinical trials show guselkumab to be better than current medicines.

# rare-disease - Wednesday 25 February, 2015

Mother of Cork toddler thanks hospital for saving her daughter with rare diabetes Never Seen Before

Mother of Cork toddler thanks hospital for saving her daughter with rare diabetes

Feb 25th 2015, 7:30 PM 19,964 Views 8 Comments

Medication designed for Ava has meant that she no longer needs an insulin pump and can now live at home.

# rare-disease - Monday 23 June, 2014

Bad heartburn? You might have Barrett's Oesophagus Rare Disease

Bad heartburn? You might have Barrett's Oesophagus

Jun 23rd 2014, 7:15 AM 22,165 Views 16 Comments

The condition can lead to cancer, so it’s important to get it checked out.

# rare-disease - Sunday 30 March, 2014

“People are being left to rot”: Rare disease sufferers feel let down by health service Awareness

“People are being left to rot”: Rare disease sufferers feel let down by health service

Mar 30th 2014, 8:45 AM 30,661 Views 46 Comments

The daughter has been advised to get treatment abroad for her condition – but it might cost the family thousands of euro.

# rare-disease - Saturday 23 November, 2013

Column: ‘I was a regular teen who has unfortunately dealt a harder life than most’ Opinion

Column: ‘I was a regular teen who has unfortunately dealt a harder life than most’

Nov 23rd 2013, 7:00 PM 4,162 Views 27 Comments

Niamh n Ruarí was diagnosed with a disease that affects one in every 200,000 people, but is determined to re-educate society on the perceptions they have of those who are physically less fortunate.

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