2025 Community Conference Agenda Saturday 15 November 2025, theStudio, 7 Cannon St, Birmingham, B2 5EP *Agenda and speakers subject to change
From 09:30 10:00 - 10:05
Registration and Refreshments Welcome and Opening Remarks by Kirsty Hoyle, CEO MSUK
Low Protein Cooking & IMDs
10:05 - 11:15
hosted by Helen Morris, MSUK with Dr Srividya Sreekantam & Anne Daly
11:15 - 11:30
Break
11:25 - 11:30
My Life Lived Well
11:30 - 11:40 11:40 - 12:15 12:15 - 12:30 12:30 - 1:15 1:15 - 1:30 1:30 - 2:30
Advoca Health
with Michael Trueman & Shyam Dhokia
Rare Disease Landscape
hosted by Kirsty Hoyle & Dr Elise Wilby, MSUK
Live Well with an IMD by Carl Lander
Lunch LifeArc
by Adrien Lemoine
IMDs and Reclaiming Joy (Mental Health/Wellbeing) hosted by Helen Morris, MSUK
2:30 - 2:45
Break
2:30 - 2:45
My Life Lived Well
2:45 - 3:45 3:45 - 4:00
Home Care: Access & Your Experiences
hosted by Helen Morris, MSUK with Kirsty Darling
Closing Remarks Break Away Sessions
10:15 - 11:00
HFI Community Meeting
10:15 - 2:45 Rare Bone Disorder Network Dr Kassim Javaid, University of Oxford 11:30 - 12:30
PA & MMA Community Connect
11:30 - 2:45
HCU Community Day with Danae Bartke, HCU Network America