Last week our incoming CEO, Shelley Simmonds, completed a 5 day intensive training programme in Barcelona, having been selected to take part in the ‘Expert Patient and Researcher EURORDIS Summer School’.
The Summer School, focusing on medicines research and development, is part of the wider EURORDIS training programme which enables patients and researchers to gain an understanding of the regulatory process for the development of rare disease medicines.
The training provided empowers patients to advocate at European and International levels in forums such as the European Medicines Agency’s Committee for Orphan Medicinal Products (COMP), together with providing knowledge on clinical trial methodology, clinical research, ethics, regulatory affairs and health technology assessment.
Of the experience, Shelley says:
I was delighted to be given such an enlightening and empowering opportunity and have taken away so much from the week – most of which I hope to be able to put into practice when advocating for the Duchenne community as a whole.
Solid Biosciences announce FDA have removed clinical hold from their gene therapy trial
