RAREsummit26 Programme
Talks, panel discussions, Q&A, fireside chats, breakout sessions, live pitching, networking
Meet the speakers
| Time | Topic | Session description | Speakers |
|---|---|---|---|
| 08:30 – 09:10 | Registration and networking | Familiarise yourself with the venue, visit exhibition stands, view posters, enjoy a coffee and mingle. | |
| 09:10 – 09:20 | Welcome & Overview | Opening remarks, housekeeping, agenda for today | Sarah Baker, CEO, CamRARE |
| 09:20 - 10:00 | UK Policy Panel: Driving Change for those Living with Rare | Policy in Practice: 2026 is a pivotal year where the UK rare disease framework is being reviewed, evaluated and refreshed. We'll explore how different groups are working to improve diagnosis, care coordination, specialist access and awareness. | Sue Farrington, RAIRDA; Steph Croker, Office for Life Sciences; Nick Meade, Genetic Alliance. Moderator: Sarah Baker, CamRARE |
| 10:00 - 10:20 | Self-Advocacy in Rare Disease: Lessons from Research and Real Life' | How can parents, carers and patients develop self advocacy skills and navigate the challenges of living with a rare condition? | Juliette Harris, National EDS Service London, London North West University Healthcare NHS Trust; Jacqui Fish, Annabelles Challenge |
| 10:20 - 10:50 | Networking Break | Browse the exhibition stands and posters. Grab a coffee and mingle. | See exhibitors and posters in the main RAREsummit26 menu |
| 10:50 - 11:15 | Living with SMA | Steven lives with SMA will take us through growing up rare, the real-world experience of being on a treatment and the wider care and support he needs. | Steven Jones, PLRD |
| 11:15 - 11:40 | Bridging the Gap | A Midlands-wide NHS service evaluation across the three haemophilia comprehensive care centres exploring how people living with inherited bleeding disorders (IBDs) access, understand and use treatment-related information as well as their involvement in treatment decisions. | Laurence Woollard, On The Pulse Consultancy; Rich Gorman, Brighton and Sussex Medical School |
| 11:40 - 12:30 | PARALLEL SESSIONS | ||
| 11:40 - 12:30 | A: Workshop: Rare Partnership | How to work collaboratively to make change happen | Kyowa Kirin and partner groups |
| 11:40 - 12:30 | B: Rare Care | The Rare Care project output | Lindsay Birrell, Realise Advocacy; Josie Godfrey, JG Zebra Consulting |
| 11:40 - 12:30 | C: Workshop: MHRA | MHRAs Patient Centred Benefit Risk Framework | MHRAs Patient Centred Benefit Risk Framework |
| 12:30 - 13:45 | Lunch | Browse the exhibition stands and posters. Grab some food and mingle. | See exhibitors and posters in the main RAREsummit26 menu |
| 13:45 - 14:25 | The Many Faces of Rare | Living with rare is complex, but some elements apply across all rare conditions. This session will explore some of those areas from mental health, care and support, advocacy and research studies. | Lauren Roberts, Rareminds; Jayne Hughes, Amy & Friends; Niveda Kiridaran, PLRD. Moderator: Loretta MacInnes, CamRARE |
| 14:25 - 15:00 | Champions of Rare - "my why" | Parents who are champions for their children and other families: starting new charities, funding and creating research projects, supporting families. | Gavin Hepherd Hall, Rare 4 Schools; Hannah Humphrey, Tango2/RDRN; Jonathan Bracey, MVA society. Moderator: Helen Boyd, CamRARE. |
| 15:00 - 15:35 | Networking Break | Browse the exhibition stands and posters. Grab a coffee and mingle. | See exhibitors and posters tabs in the main RAREsummit26 menu |
| 15:35 - 16:25 | PARALLEL SESSIONS | ||
| 15:35 - 16:25 | A: Workshop: Access to NHS data for research | NHS Secure Data Environments provide researchers with access to de-identified patient data. How should we weigh and communicate benefits versus re-identification risk and privacy concerns in rare disease research using data from genomic testing? | Hana Lango Allen, Cambridge University Health Partners; Elsie Makachiya, Eastern England Secure Data Environment |
| 15:35 - 16:25 | B: UCB Workshop | Title to be confirmed. | UCB Pharma |
| 15:35 - 16:25 | C: If Only I Knew... What would make rare disease research work better for you? | If Only I Knew... What would make rare disease research work better for you? | Liz Walder, PhiZ and Co and Philippa Pristera, PhiZ and Co |
| 16:25 - 17:15 | Innovation Showcase | A showcase of innovation making a difference to rare conditions in research and clinical trials. Alongside this how will the new regulatory framework accelerate rare treatments reaching patients? | Alessandra Gaeta, LifeArc; Tim Guilliams, Healx; Lucinda Billingham, University of Birmingham; Dr Alison Niewiarowska, MHRA. Moderator: Hazel Jones, Ambrose Healthcare. |
| 17:15 - 17:30 | Closing Remarks | Reflections from the day. | Emma Green, Chair of Board of Trustees, CamRARE |