An Easy Guide to Rare Diseases has been produced to increase awareness about the challenges of living with a rare disease and to highlight the priorities that need to be included in the forthcoming National Plan for Rare Diseases in Ireland. This guide was launched by Minister Alex White on Rare Disease Day 2013 in February of this year with the help of IPPOSI and includes a profile of Josephine McGuirk, an Alpha-1 patient.
This guide has several aims including to explain what a rare disease is, to highlight the challenge of living with a rare disease in Ireland through patient profiles, to identify priorities that should be included in the National Plan for Rare Diseases in Ireland and to contribute to the development of a National Clinical Programme on rare diseases in Ireland. The guide also profiles 15 people living with a rare disease in Ireland, one of whom is Josephine McGuirk, an Alpha-1 patient.
An Easy Guide to Rare Diseases can be downloaded here.