Report highlights gaps in rare disorder services
Many gaps exist in support services for people with rare disorders, it will be claimed today.
A report published by RehabCare and funded by the Health Research Board will be launched in the Science Gallery in Trinity College.
It is estimated that there are more than 350,000 people on the island of Ireland who are affected by rare disorders, which include Prader Willi Syndrome, Cornelia de Lange, Williams Syndrome and Fragile X.
"Research into the social support needs of individuals and families who experience rare disorders is set to highlight key gaps in current service provision," said a Rehab spokesman.
The Report on Rare Disorders on the Island of Ireland surveyed more than 200 GPs across the island and also extensively consulted with families affected by rare disorders.
The findings will identify what information and support services are required for sufferers as very little Irish research has been carried out in this area.
