This event offers a unique opportunity to understand rare conditions not only as medical issues, but as lifelong human experiences.
We will also hear reflections from leaders across healthcare, industry, research and support organisations in a multidisciplinary panel designed to explore how systems can better respond to the needs of the rare community.
Join CamRARE on 27 February 2026 at the DISC, AstraZeneca, for ‘Living Rare: reflections across a lifetime_’_, a powerful and thought-provoking exploration of what it truly means to live with a rare condition.
Through first-hand stories from individuals and families in our rare community, we will shine a light on the challenges, milestones, and defining moments that shape life from early childhood through adulthood.
The event will explore key stages along the rare life journey, including:
- Symptoms & First Signs: When something feels wrong and the crucial role of primary care
- The Diagnostic Odyssey: The often long and exhausting search for answers
- Growing Up Rare: Childhood, friendships, identity and family impact
- School & Education: Barriers, accommodations and inclusion
- Independence: Daily life, autonomy and navigating support systems
- Employment: Entering and remaining in the workforce
- Adulthood with a Rare Condition: Ongoing medical, emotional and social realities
We will also hear reflections from leaders across healthcare, industry, research and support organisations in a multidisciplinary panel designed to explore how systems can better respond to the needs of the rare community.
This event offers a unique opportunity to understand rare conditions not only as medical issues, but as lifelong human experiences.
Speakers include:
- Professor Stephen Morris - Cam Uni
- Jill Walker - Beacon Scientific
- Loretta MacInness - My Fabry Disease
- Gavin Hepherd-Hall - Rare4Schools
- Jo Balfour - CamRARE
- Dr Gemma Chandratillake - East Genomics
- Hannah Humphrey - Genomics England Patient Panel member
- ….and more to come.
