Should this be determined only by access to a specialist medical team, or by 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?

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.

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”.