Cork couple campaign to highlight rare diseases
Rare Diseases Ireland (RDI) estimates that 300,000 people in Ireland, or one in 17 people, are living with a rare disease, of which there are more ...
Source: echolive.ie
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Cork mum: Telling me my son is a 'medical mystery' is not good enough
A Cork mum opens up about the ‘lack of support’ in the diagnosis and treatment of her son’s rare condition, writes CHRIS DUNNE
Source: echolive.ie
Dublin toddler wouldn't have made her second birthday if rare disease wasn't caught on time
A Dublin toddler wouldn’t have made her second birthday if doctors hadn’t diagnosed her rare disease on time.
Source: independent.ie
Calls For Increased Resources For Genetic Services In Treating Rare Diseases
A Clare mother and daughter are calling for increased resources for genetic services in treating rare diseases. A new campaign called Get Rare Aware is aimed at raising awareness of rare diseases and improving the quality of genetic services. Ciara Micks, aged 21, was diagnosed with Ehlers Danlos Syndrome in 2015. The rare condition, […]
Source: clare.fm
Anne Micks Discusses Challenges Faced By Her Daughter Ciara As She Battles Rare Disease
On Monday’s Morning Focus Pat Flynn was joined by Anne Micks who is part of a new national campaign ‘Get Rare Aware’ which has been launched by Rare Diseases Ireland. The campaign will see RDI hosting information events in each of the country’s new Regional Health Areas (RHAs) over the next two months to highlight […]
Source: clare.fm