BSGM Lunch & Learn - April 2026: Living with Alström Syndrome & Developing and Sustaining a Rare Disease Service
A BSGM 'Lunch & Learn' online session, bringing together members from across the Society to learn and discuss topics of interest to all
Details
When? Wednesday 22 April 2026, 12:30 to 13:30
Where? Zoom
A BSGM 'Lunch & Learn' online session, bringing together members from across the Society to learn and discuss topics of interest to all
Alström Syndrome UK (ASUK) was established in 1998 and is a registered charity providing information and support to individuals and families living with Alström Syndrome (AS) and to the service providers working with them. ASUK works in partnership with Birmingham Women's and Children's Hospital and the Queen Elizabeth Hospital, Birmingham to deliver a highly specialised service, funded by NHS England. ASUK aims to provide personalised support, raise awareness, conduct pioneering research, and enable better treatments and monitoring through the AS multi-disciplinary clinics.
ASUK co-founded Breaking Down Barriers, a network of over 70 organisations providing support to people living with rare and genetic conditions. The Experts by Experience Advisory Group provide understanding of the lived experiences of people from diverse, marginalised and under-served communities who are affected by rare and genetic conditions.
ASUK co-founded Breaking Down Barriers, a network of over 70 organisations providing support to people living with rare and genetic conditions. The Experts by Experience Advisory Group provide understanding of the lived experiences of people from diverse, marginalised and under-served communities who are affected by rare and genetic conditions.
Kerry Leeson-Beevers is Chief Executive of Alström Syndrome UK, and Kerry has lived experience as her son is diagnosed with AS which is an ultra-rare and complex condition. She is a patient representative on the England Rare Diseases Framework Delivery Group and is co-applicant on various NIHR funded research studies. Kerry has been involved in various UK, EU and global projects focussing on rare diseases, genomics and drug development and is experienced in patient and public involvement and engagement.
Kerry will share her own lived experience of being a mum to an incredible young man who is diagnosed with an ultra-rare condition. She will reflect on some of the positives and also some of the challenges they have experienced along the way. Kerry will share Alström Syndrome UK's experience of developing and sustaining a highly specialised service and the work they do to deliver multi-disciplinary clinics and support the community.
All sessions will be recorded and available via the BSGM website for members unable to attend live.
If you are unable to attend and have any questions you would like to submit in advance please send them to events@rsb.org.uk
Past events
For recordings of our previous talks in this series, please see the members area of the BSGM website: Lunch and Learn.
Cost and booking
This event is free to attend and open to all BSGM members (ACGS/AGNC/CGS/CGG/FGG) as well as non-members. Advanced registration to watch live is essential through the link at the top of the page and the Zoom meeting link will be circulated ahead of the event.