In November last year, I attended RARESummit 2025, and sat on a panel talking about mental health in the rare disease world.

Jo Balfour, managing director of CamRARE kicked off the event in her keynote speech, celebrating 10 years of CamRARE. She shared 10 moments covering 10 years of the charity, sharing highlights and lessons from each. Then followed business pitches, reflections on how the rare disease circuit has evolved, and a talk by Dr Lucy McKay discussing how human rights and rare disease intersect.

Our panel: Navigating Mental Wellbeing With A Rare Disease took place in the afternoon. Chaired by Loretta MacInnes, I sat alongside Tom Staniford and Kelly Kearley (PTENUKI). We first covered something important. What does wellbeing actually mean to us?

We then moved on to our experiences with mental health and wellbeing professionals. I shared my experiences living with ARFID, and the lack of support available in the UK, and my journey through grief after losing a close friend who understood the disability world. Kelly shared her experiences of having her son being diagnosed with PTEN Hamartoma Tumor Syndrome, how health professionals were unsupportive, and how she was ineligible for mental health support on the NHS. Tom also shared his experience of having a supportive family, and not feeling the need for mental health support.