Being diagnosed with a rare disease can be daunting with little public knowledge about the disease available, making it difficult to let others know the seriousness of the condition. We are passionate about raising awareness of Inherited Metabolic Disorders and advocating for patients and families with these rare conditions. However, we can’t raise awareness alone and we need your help. By helping us raise awareness of Inherited Metabolic Disorders, you can help make these disorders more widely known, which can in turn help us campaign more easily for better support and treatment for patients and families affected by Inherited Metabolic Disorders.

We have a few volunteering opportunities where you can help us raise awareness of Inherited Metabolic Disorders. Click on the links below to find out more!

Community Ambassador Programme

Patient Insight Series

Still unsure if the Community Ambassador role is for you? Meet some of our Community Ambassadors and hear what they get up to here.