Our campaigns
Living Well
What does it mean to “Live Well” with a rare condition?
95% of rare conditions do not have an approved treatment and our rare community need support to live well now. Our 2023 research, Thoughts into Action told us that our rare community want support now to achieve the best possible quality of life; we want to live well with a rare disease.
Our “Living Well” movement is aiming to ensure that people living with rare diseases have access to treatments and clinical trials but also to have cohesive support structures that help us live well everyday and offer support with employment, education, benefits, and access to joy!
Think Ammonia!
High ammonia kills and people are dying because of overlooked symptoms.
The “Think Ammonia!” campaign aims to improve outcomes for people experiencing high ammonia by ensuring people know the signs, test earlier and save lives. This comes after the death of Rohan Godhania, who was only 16 when he died, an outcome that may have been different if high ammonia was diagnosed and treated.
Our campaign is raising awareness with healthcare professionals and the public to ultimately increase the number of ammonia tests carried out to ensure timely diagnosis and treatment.
