Altogether, there are an estimated 300,000 people in Ireland who are living with a rare disease. However, given the increasing amount of genetically-oriented rare diseases, it's possible that even…
According to a recent article from Donegal Daily, patients with hereditary amyloidosis in Donegal, Ireland created a film on the condition that has been plaguing parts of Ireland for ages.…
12-year-old Cezy Fosca lives in Kilkenny City and suffers from Morquio syndrome. Her family waited for months on approval for her treatment, after she lost access to it. Finally, the…
The idea that a possibly life-altering medication is being denied to children is certainly something that will get the fires of the masses stoked. Imagine how inflamed the mob will…
I have a new hero, an Irishman who’s not only gotten some great press and notoriety, this guy has struck gold in the hearts of the Morquio syndrome community! In…
Imagínese estar preocupado porque su risitas 6 meses de edad hijo no quiere comer, tiene estreñimiento, y la pérdida drástica de peso. Los médicos le dicen que tiene una enfermedad…
Imagine being worried because your giggling 6 month old son won't eat, is constipated, and drastically losing weight. The doctors tell you he has a rare disease that affects all of…
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