About this Event
Our 2025 Annual Community Conference will take place on Saturday the 15th of November in Birmingham at The Studio, 7 Cannon St, Birmingham B2 5EP.
Come meet other families and people living Inherited Metabolic Disorders at our 2025 Annual Community Conference. Our event is an opportunity to form friendships and connections across the IMD Community whilst sharing your voice and hearing from a range of speakers.
What's on?
Our Annual Community Conference is really shaping up, to see a full run down of what to expect and all the extra details for the day check out the website events page. Meet the team, meet our speakers, and get a sneak peak at the day's activities!
Already have some burning questions for our sessions? Share them with us now by emailing and catch the answers in the Q&A!
More speakers to be announced! Sessions are subject to change.
The Venue
The venue is accessible with an accessible bathroom. Birmingham New Street Station is the closest station with just a 2 minute walk to the venue, but Snow Hill and Moor Street are also within a walkable distance. There are two carparks around a 10 minute walk from The Studio: NCP High Street (postcode B4 7LN) and NCP New Street (postcode B5 4AN).
Travel Bursary
We are excited to able to offer support for travel expenses, please complete our Travel Bursary Application (link below), if you need financial support to attend this event:
This form will now close at 5pm on Friday 24th October 2025.
For any questions email [email protected]
Agenda
Living well with an IMD!
Info: This session focuses on what it means to live well with an IMD. It will explore how quality of life extends beyond treatment access, highlighting the importance of education, employment, joy, and personal identity in daily life. Participants will discuss practical ways to support living well with an IMD today.
Low Protein Cooking & Diets
Info: This interactive session will explore practical tips and ideas for managing a low-protein diet. There will be a chance to share favourite recipes, discover new low-protein food options, and exchange everyday strategies for making food enjoyable.
IMDs & Mental Health
Info: This session focuses on nurturing mental health and wellbeing by exploring how individuals and families living with IMDs can reconnect with what brings them joy. This discussion will celebrate everyday moments of happiness, the power of gratitude, and practical ways to hold onto hope and enjoyment. Participants will be invited to share experiences and approaches that help integrate joy, self-care, and emotional resilience into daily life.
My Life Lived Well: Community Presentations on Living with a Condition
Info: Throughout the day, individuals living with IMDs will share short talks about their experiences of living well with their condition. These personal stories offer genuine insight into daily life and highlight how systems can better support people to thrive.
Understanding the Rare Disease treatment landscape in a changing UK healthcare
Info: This session will explore the evolving treatment landscape for rare diseases within the context of a changing UK healthcare system. It will examine current challenges and opportunities in access and innovation and will provide insight into treatments in development for IMDs
True Faces of Rare - photo sessions
Info: You told us you want to see more real people living with IMDs represented in the content we share. So we’re giving you the chance to be part of that change. A professional photographer will be on hand to capture portraits of anyone who’d like to take part!
Homecare
Info: This session explores what home care is and how people access it, including a look at nursing support. Two roundtable discussions will focus on access and prescription, and participants’ experiences of what works well. We’ll also be launching our new Home Care webpage.
Your Condition! HCU Community
Host: Danae Bartke - HCU Network America
Info: This session will bring together members of the Homocystinuria (HCU) community for an engaging and informative discussion. It will be led by Danae Bartke from HCU America, who will be flying over to share her expertise and connect with attendees. The session offers a valuable opportunity for community members to come together, share experiences, and learn from a leading voice in the field.
Your Condition! Adult Rare Bones Disease Network
Host: Dr Kassim Javaid - University of Oxford
Info: Adult Rare Bone Disease Network meeting, hosted by Dr Kassim Javaid (University of Oxford). This session will bring together healthcare professionals, patient organisations, and individuals living with rare bone conditions as part of the Adult Rare Bone Disease Network. It will provide a progress update on the network’s work to date, highlight alignment with the Rare Disease Strategy, and offer space to review and discuss key performance indicators. The session will also include updates on training initiatives and outline proposed objectives for 2025–2026, with opportunities for collaborative input and discussion.
MSUK Metabolic Advisory Council Insight Meeting
More speakers to be announced! Sessions are subject to change.
Event Venue & Nearby Stays
The Studio, 7 Cannon Street, Birmingham, United Kingdom
GBP 0.00
