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Golf champion Carol Brill said daily tasks can be “very, very stressful” for people with sight and hearing loss.
About 1,000 people in Ireland have HHT but many more are undiagnosed.
Keelin’s husband Conor was in attendance while Health Minister Simon Harris also paid tribute.
Around 6% of the population in Ireland is living with a rare disease such as PKU and cystic fibrosis.
People with this rare genetic condition need to maintain strict low-protein diets.
Many drugs for rare diseases have been ruled as not “cost-effective” under existing criteria.
Irish people living with Huntington’s Disease will have an audience with Pope Francis tomorrow.
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.
It is estimated that there are over 6,000 rare diseases in existence in Ireland impacting an estimated 300,000-plus children and adults.
The National Rare Diseases Office was opened today by the Health Minister.
Both of Tony and Mary Heffernan’s children died at the age of 5.
The Rare Disease Taskforce has asked the HSE to clarify its position in relation to the Treatment Abroad Scheme that could help.
Regulators in Ireland must now approve the drug ahead of negotiations between the drug’s manufacturer and the HSE regarding pricing.
The government is looking for consultations up until 13 July from anyone affected by rare diseases.