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Dublin: 9°C Wednesday 27 January 2021

#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
# 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 33,800 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
# Pku

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

Oct 20th 2017, 12:05 AM 29,504 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
# Rare Disease

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

Aug 5th 2017, 8:22 AM 18,171 Views 53 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
# 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 26,310 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
# Appeal

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

Apr 9th 2017, 8:00 AM 72,024 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
# Pku

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

Feb 28th 2017, 6:20 AM 39,963 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
# 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 31,513 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
# Degos Disease

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

Oct 8th 2016, 7:00 PM 18,903 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
# Health

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

Jul 11th 2015, 9:15 AM 48,844 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
# Never Seen Before

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

Feb 25th 2015, 7:30 PM 20,045 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
# Rare Disease

Bad heartburn? You might have Barrett's Oesophagus

Jun 23rd 2014, 7:15 AM 22,781 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
# Awareness

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

Mar 30th 2014, 8:45 AM 33,611 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
# Opinion

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

Nov 23rd 2013, 7:00 PM 6,138 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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