Tuberous Sclerosis

EDM number 177 in 1998-99, proposed by Paul Burstow on 13/01/1999.

That this House recognises the serious genetic disorder tuberous sclerosis, which produces tumours at random in the brain, heart, skin and many other organs of the body; regrets the lack of awareness of it by policy makers, health professionals and the wider public and recognises that this results in many sufferers remaining undiagnosed or misdiagnosed until after they have a severely affected child; welcomes the efforts of the Tuberous Sclerosis Association to educate both those affected and health professionals; urges that the method of funding specialist services in the NHS after April 1999 should still allow referral of patients with TSC to the six specialist tuberous sclerosis clinics in the UK as local services are inadequate to treat this complex disorder which affects every system of the body; and calls for the dissemination within the NHS of the Care Pathways and Clinical Guidelines developed in the collaborative Scottish Clinical Genetics Services Project.

This motion has been signed by a total of 68 MPs.