Case study and resources: Beacon for Rare Diseases

Although it can feel daunting to become an advocate, patients and patient organisations are not alone. In this case study, you will hear about resources that are available to you to start or advance your advocacy and research skills.

Beacon for Rare Diseases is a charity that provides training and support for a wide variety of patient advocates, within and beyond the UK. In this video, we will hear from Blayne Baker Garwood and Eve Hewitt about the work Beacon does, which of their courses and resources are most in demand, and where the sector is going.

Further resources mentioned in the video are available here:

Beacon for Rare Diseases website

The Resources Hub

Beacon’s Rare Community

ABPI (Association of the British Pharmaceutical Industry) Patient Organisation Forum

ABPI Code of Practice for the Pharmaceutical Industry (2024)

REMEDi4ALL (‘Remedy For All’) home page