Not that we’re ones to blow our own trumpets, but subscribing to our newsletters is a great way to find everything you need to know about our upcoming patient advocate training events and projects, as well as those occurring in the wider rare disease community. Sign up to the monthly newsletter if you want your updates all in one longer email or the community mailing list if you want to be kept in the loop as news happens.
Genetic Alliance UK newsletters
Genetic Alliance UK and their partner charities Rare Disease UK and SWAN UK are doing excellent work in rare disease advocacy, not least through conducting research into the reality of living with rare diseases and campaigning for policy change. They also hold events to inform the wider community about their work and train patient advocates.
EUPATI stands for European Patients Academy and its mission is educating patients in medicines development, clinical trials, medicines regulation and more. As well as training events and webinars, they also have an online toolkit full of helpful courses. Subscribe via the footer of their website.
EURORDIS is an alliance of 800+ rare disease patient organisations across Europe. As well as advocating for policies that promote the development and distribution of rare disease medicines, EURORDIS also provides information for patient advocates through programmes like their Winter School. Sign up to their newsletter on the right-hand panel of their news page.
Patient Information Forum
The Patient Information Forum is a membership organisation for people delivering healthcare information and support. Their key resources is the ‘Best practice toolkit’ which shares how health information can be high quality, easy to access and easy to understand. You have to be a paying member to benefit from their full range of services but their toolkit and news, which includes notifications of upcoming training events, can be accessed through their website.