An Easy Guide to Rare Diseases in Ireland
A Resource for the Media and the General Public.
In March 2013, the Rare Disease Taskforce, (a group of organisations involved in the development of a national plan for rare disorders in Ireland) launched a new document entitled “An Easy Guide to Rare Diseases in Ireland - A Resource for the Media and the General Public.” This guide is a resource to highlight what rare disorders are, how they affect people and what issues should be addressed in Ireland’s national plan. One of the case studies which has been included in this document (on page 26) features Fatiha and Manal Akka, MDI members from Dublin who have congenital muscular dystrophy.
Download the full report (PDF file - size: 1384 KB)