PSC Support has long been involved with the work of the European Medicines Agency (EMA) and US Food and Drugs Agency (FDA) to ensure the PSC patient voice is heard by those making regulatory decisions around medicine development. In fact, Martine Walmsley is a 'Patient Expert' for the EMA and has presented the PSC patient perspective on research priorities and our unmet needs to both the EMA and FDA when they have been considering clinical trial design for PSC research.
With the EU Exit looming, we have stepped up our involvement with the UK's regulator for medicine development by joining the Medicines and Healthcare products Regulatory Agency (MHRA) Patient Group Consultative Forum (PGCF).
Martine and Maxine attended the MHRA public Board Meeting on 22 July. The MHRA is presently running a consultation on their engagement with patients and the public. PSC Support has contributed and we are heartened to see the efforts being made by the MHRA for genuine patient involvement in its work.