Last week MAP BioPharma welcomed leading stakeholders to join representatives from companies from the Access to Orphan Medicines Steering Group* to a reception and structured discussion in Parliament on the issue of access to rare disease medicines.
The event, chaired by Alex Sobel MP, was attended by patient groups, professional groups, and Parliamentarians.
The event saw contributions from invited speakers including Paul Catchpole (Value and Access Director, Association of the British Pharmaceutical Industry); Christian Hill (MAP BioPharma, CEO); Dr Jayne Spink (Genetic Alliance UK, CEO); and Catherine Woodhead (Muscular Dystrophy UK CEO).
Following contributions from the panel, attendees gave their perspectives on improving access to medicines for rare diseases.
MAP also made its recently published infographic available at the event. This infographic was produced to illustrate the key themes and findings set out in MAP’s report Access to Orphan Medicines: A Case for Change.
MAP looks forward to continuing to engage with all stakeholders in seeking to improve patient access to orphan medicines.
MAP’s full report can be found here.
* The Steering Group members are Amicus Therapeutics, AveXis, bluebird bio UK, Chiesi Limited, Gilead Sciences, Inc, Kyowa Kirin International and Santhera Pharmaceuticals. Each company has made an equal financial contribution to support this work. MAP retains editorial control.