Special Families - Special Needs Week

EDM number 938 in 1995-96, proposed by Dafydd Wigley on 04/06/1996.

That this House welcomes the initiative of Contact a Family in co-ordinating the Special Families-Special Needs Week 8-14th June to raise awareness of the lives of families caring for children with rare conditions; notes that most rare conditions are known as orphan diseases meaning that treatments, therapies and research may not attract current funding because the conditions affect relatively few families; further notes that the current methods of collecting statistics are haphazard or non-existent, making it difficult to be specific about numbers affected but, as diagnostic techniques improve, known incidence increases; and recognises the difficulties faced by these families in obtaining a diagnosis, learning to care for their children and carry out complex medical procedures as well as incurring additional pressures in accessing relevant information and early access to relevant specialists.

This motion has been signed by a total of 53 MPs.