Living Well Symposium
Stoke Town Hall, Stoke-on-Trent, UK March 7th 2025
What does it mean to “live well” with a rare disease? Should this be determined by access to a specialist medical team, or through having one of the 5% of conditions where a life-changing treatment is in development or available? Treatment access is vital but are the vast majority for whom this is not a current reality being empowered to live well today? And is access to treatment fairly delivered for the rare disease community? We invite you to join us to join uas at our symposium, the inaugural event for the Living Well Movement, a campaign with two goals:
Living Well Movement: Goals
- Rare disease community to understand and advocate for their rights under the Equality Act 2010.
- “Living Well” defined by the rare disease community and for these definitions to be reflected in rare disease policy.
We know that living well today matters; this event has been inspired by the rare disease community and shaped by research. In 2023 Metabolic Support UK undertook the first qualitative research into what living well – or ‘quality of life’ – means to our rare disease community, not what we are told it is by the systems that surround us. This research Thoughts into Action told us that having access to education, joy, employment, and positive personal identity are key to living well today.
The Living Well symposium is a curated space designed to bring rare disease advocates together to place greater focus on how we embed living well in our society, laws, and policy.
Our agenda is designed to educate, empower, and invigorate the rare disease community on the legal and policy frameworks that impact their lives and empower them to make change. We will focus on the impact of the disability rights movement and how this intersects with our rare disease community; understanding how diverse individuals live well and how they do it!
We want you to be a part of making this happen. We know that you care as much as we do about improving the lives of the rare community and this is an opportunity to be part of something new.
Living Well Symposium: Objectives
- Attendees will understand what it means to “Live Well” with a rare disease.
- Attendees understand the importance of the Equality Act 2010 and how it can help people to “Live Well” with a rare disease.
- Attendees will leave the event believing that with the right support and choice people living with a rare disease can “live well today”.
Living Well Videos
What does it mean to “live well” with a rare disease?
Watch these short videos of people describing what “living well” with a rare disease means to them.
Interested in our videos? Click the button below:
Living Well Posters
Explore our Living Well posters!
We invited the rare disease community to develop posters that tell their story.
Interested in the posters? Click the button below:
Living Well Speakers
Want to learn more about our speakers?
We’ve put together a page where you can find out more about their background!
Interested in our speakers? Click the button below:
Are you interested becoming a sponsor?
Become a sponsor and support a movement working to improve the lives of people living with rare diseases.
Our Living Well movement is designed to place greater focus on how we embed living well in our society, laws and policy, supporting the rare disease community to access the services they need to “live well today”.
Interested? Get in touch with us via our contact form to find out about sponorship:
