Let’s Talk Training Tour – stopping off at a virtual location near you!

This year, the Rare Disease Day reception at Westminster welcomed the rare disease community. People with lived experience, organisations at the heart of this work and policy makers discussed everything rare, the progress made toRead more

We have joined forces with the GRACE project which stands for Genetics Research Awareness via Community Engagement. The Grace project is a team of researchers who are passionate about all things genetics related, and theirRead more

Community Outreach in Action! A key area of our work moving forward is our Community Outreach. We have been running a successful pilot project in West Yorkshire and the impact and engagement through this project hasRead more

Let’s Get it Right for Young People T-KASH (Transition – Knowledge and Skills in Healthcare) are FREE resources which were originally created in 2015 by young people from the Alström Syndrome UK (ASUK), Hear My Voice Youth Forum. The resources areRead more

Department of Health and Social Care (DHSC) 10 Year Health Plan Workshop Consultation    In February 2024, BDB and DHSC worked in partnership to deliver a workshop as part of the government’s consultation on theRead more