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Dublin: 4 °C Sunday 19 January, 2020

#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'

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'

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'

“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

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

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

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'

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

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

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

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

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

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’

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.