Earlier this year we joined forces with the Genetics Alliance and the Association for Glycogen Storage Disorders to petition the National Assembly for Wales to review the use of the exceptionality rule in determining whether a patient can access a treatment through the Individual Patient Funding Review (IPFR) process. Together we collected 1089 signatures.

At their meeting yesterday morning the Petitions Committee agreed to refer our petition and the call for review to the Health and Social Care Committee. You can view footage of the meeting here (start viewing at the 10 minute mark).