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 lifechanging 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”.