We are Supporting Genetic Alliance UK's ‘Resetting the Model’ Project
11 December 2018
We are taking every opportunity to attend All Party Parliamentary Groups (APPGs) to give voice to the SMA Community’s frustrations and distress caused by the NICE appraisal process for nusinersen.
On December 3rd, we were at the All Party Parliamentary Group (APPG) on Rare, Genetic and Undiagnosed Conditions which focused on access to rare diseases medicines in England.
On December 10th, we joined the APPG on Access to Medicines and Medical Devices.
We are supporting Genetic Alliance UK's ambitious project aimed at improving the way that future decisions on rare disease medicines are made as a positive way forward.