CamRARE – Living Rare: Reflections Across a Lifetime

Fri 27 February

The Discovery Centre (DISC), AstraZeneca PLC, Cambridge Biomedical Campus

Living Rare: reflections across a lifetime is a powerful and thought-provoking Rare Disease Day event exploring what it truly means to live with a rare condition, from early childhood through adulthood.

Through first-hand stories from individuals and families within CamRARE’s community, the event will highlight the challenges, milestones and defining moments that shape a lifetime of living rare. Speakers will reflect on the journey beyond diagnosis, bringing to life the social, emotional and practical realities that sit alongside medical care.

Key stages explored will include:

Early symptoms and first concerns

The diagnostic journey

Childhood, identity and family life

Education, inclusion and support

Independence and daily living

Employment and long-term adulthood

Alongside lived experience, a multidisciplinary panel of leaders from healthcare, research, industry and support organisations, chaired by Jill Walker, will consider how systems can better respond to the evolving needs of the rare community across the life course.

This event offers a unique opportunity to see rare conditions not only as clinical challenges, but as lifelong human experiences, and to connect with CamRARE’s wide and collaborative network.

Speakers include:
Professor Stephen Morris (University of Cambridge)
Jill Walker (Beacon Scientific)
Loretta MacInness (Fabry and Me)
Gavin Shepherd-Hall (Rare4Schools)
Jo Balfour (CamRARE)
Dr Gemma Chandratillake (East Genomics)
Hannah Humphrey (Genomics England Patient Panel)
Patrick Chinnery (TBC)
Members of the CamRARE rare disease community

Tickets: https://camrarerarediseaseday2026.eventbrite.co.uk

and an alternative shorter version for people to share via LinkedIn etc

Cost: From £11.55