No one left behind

Rare liver diseases affect thousands of adults and children across the UK, yet too many people face delayed diagnosis, limited access to specialist care and a lack of understanding. Through our No One Left Behind campaign, we’re working to change that by raising awareness, challenging misconceptions and giving a voice to those living with rare liver disease.

Rare liver diseases are often misunderstood and remain under the radar despite affecting tens of thousands of adults and children across the UK. Conditions such as autoimmune hepatitis, primary biliary cholangitis (PBC), primary sclerosing cholangitis (PSC), biliary atresia, Alagille syndrome and others can lead to serious, life-limiting outcomes, yet patients frequently experience delayed diagnosis, limited access to specialist care, and a complete lack of understanding of what it means to live with a chronic and rare liver disease.

Many people living with rare liver disease report experiencing stigma or feel dismissed because of misconceptions about liver conditions. These experiences, combined with gaps in professional and public understanding, contribute to inequities in treatment and outcomes.

Our No One Left Behind campaign is aimed at:

raising public and professional awareness of rare liver diseases
highlighting the lived experience of patients and families
promoting earlier diagnosis and access to specialist care
calling for greater investment in research and innovation.

Because rare should never mean forgotten.

With thanks to Ipsen for their sponsorship of this activity.

Real stories. Real lives.

Behind every liver disease diagnosis is a person, a family and a unique journey.

Watch these inspiring stories from people living with rare liver diseases and hear why greater awareness, earlier diagnosis and better support matter so much.