The Health Minister has offered to meet with the Clare families of children who have been forced to fundraise around 100 thousand euro for life-saving surgery.
A number of cases have emerged here over recent months of children with Ehlers-Danlos syndromes or EDS, which relate to connective tissue disorders.
In the cases of Aoife Sage, from Sixmilebridge, and Zara Cronin from Corofin, as well as others, the condition has had a major impact on their quality of life and both have been recommended for expensive but necessary surgery at a specialist clinic in Barcelona.
The State does not support the cost of these operations as they are conducted in a private clinic, and the girls’ cases have been raised in the Dáil by Clare Fianna Fáil TD Timmy Dooley who thinks that needs to change for all who are profoundly affected by EDS.
Health Minister Simon Harris says a plan for rare diseases, including EDS, is being drawn up, but he admits the State should be doing more.
