For patients with rare conditions, such as TSC, demonstrating that you are exceptional is practically impossible. The TSA has joined forces with Genetic Alliance UK, and the Association of Glycogen Storage Disorders to petition the Welsh Assembly to review the use of the “exceptionality rule” in determining whether a patient can access a treatment through the Individual Patient Funding Request process. If you agree that the current requirements are unfair and should be reviewed then please sing the petition.
You do not have to live in Wales to add your signature.
The petition closes on 7th July 2014.