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People with this rare genetic condition need to maintain strict low-protein diets.
People with PKU, a rare genetic disorder, are fighting for access to medication.
“I loved this child to bits. But it got to the point where there was nothing more we could do.”
Proceedings grew heated today, with Gard’s parents storming out of the courtroom at one point.
Mags Forkan suffers from Ehlers-Danlos Syndrome.
Despite being rare, Ireland has one of the highest rates of PKU in Europe.
Nellie and Lara are the only two children in Ireland with Spinal Muscular Atrophy Type 1 – an extremely rare genetic condition.
Charlotte Connolly is thought to be the only person in Ireland with Degos disease.
Clinical trials show guselkumab to be better than current medicines.
Medication designed for Ava has meant that she no longer needs an insulin pump and can now live at home.
The condition can lead to cancer, so it’s important to get it checked out.
The daughter has been advised to get treatment abroad for her condition – but it might cost the family thousands of euro.
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.