It has come to our attention that there has been an administrative delay with items sent to the new PO Box Address: PO Box 71662, London NW3 9TE. Please accept our sincere apologies if you have sent a cheque/correspondence to this address, and have not
All medicines have expected benefits and known risks. The Tuberous Sclerosis Alliance in the USA has published a paper to help parents weigh up the risks and benefits when considering treatment with vigabatrin for infantile spasms or epilepsy. The TS Alliance’s publication examines the
Prime Minister fails to recognise TSC patients in critical need When Everolimus was licensed for the treatment of TSC more than 2 years ago, no-one imagined that years later we would still be fighting for access in the face of a near total failure in
PEOPLE with Tuberous Sclerosis, their carers, friends and family are invited to attend a free meeting on Saturday, March 12 where they can find out more about their condition and the support which may be available to them. The venue is Hollymoor Centre, 8
Genetic Alliance UK are currently conducting the 'Hidden Costs' study - a study which is testing the feasibility of researching the costs associated with managing rare conditions. The research team are looking for volunteers to test a 'patient diary' over a period of 2-3 weeks.
Why not volunteer to help us to review our information factsheets? If you can spare some time to read new drafts and send us your feedback in your own time we would really appreciate it. We want to make sure we’re providing the information that
A Happy New Year and a huge thank you to everyone who has volunteered for the TSA last year, including those of you who have attended awareness events and have run regional group meetings. Your help and commitment are invaluable and I look forward to