New medicines: How should we weigh the risks and benefits? And who should do so?

This should interest you if you’re a rare disease patient group in the UK. Genetic Alliance UK is launching a recruitment campaign for an innovative and exciting research project about new medicines.

They are looking for people who are affected by a severe, rare or genetic condition, to take part in a Citizens’ Jury later this year. They are looking for up to 16 individuals to form a diverse jury that will deliberate a very important issue – the risks and benefits of new medicines. Not only will jurors get their voice heard in an innovative and high profile way, but they will be paid for their time too.

There is further information available about the project and how people can get involved on the Genetic Alliance UK website, including a short explanatory video clip and an online questionnaire for people to register their interest.

The Genetic Alliance UK has a range of material and literature, which can be distributed via emails, patient group websites and newsletters. To get access to these documents (or to simply find out more) please contact Project Officer, Amy Simpson (asimpson@glam.ac.uk) or Marketing Officer, Julian Walker (Julian@geneticalliance.org.uk).