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Dublin: 21 °C Wednesday 12 August, 2020

#rare disease

From TheJournal.ie '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'

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

From TheJournal.ie '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.

From TheJournal.ie 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'

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

From TheJournal.ie '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

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

From TheJournal.ie '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

Mags Forkan suffers from Ehlers-Danlos Syndrome.

From TheJournal.ie '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.

From TheJournal.ie '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'

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

From TheJournal.ie 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

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

From TheJournal.ie 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

Clinical trials show guselkumab to be better than current medicines.

From TheJournal.ie 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

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

From TheJournal.ie Bad heartburn? You might have Barrett's Oesophagus Rare Disease

Bad heartburn? You might have Barrett's Oesophagus

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

From TheJournal.ie “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

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

From TheJournal.ie 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’

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.