Purple

Tony has Alkaptonuria (AKU), also known as black bone or black urine disease.

By focusing on these uncommon and underserved medical conditions, we want to empower the lives of patients with rare diseases by developing and introducing new treatments, as well as providing support that extends beyond our medicines, to deliver our vision for Better Care for Rare.” Through connecting with others also affected by a rare disease, feelings of isolation can be reduced, individuals can feel empowered, and families can feel better supported. We are delighted to be shining a spotlight on the experiences of those involved, who are standing up proudly and saying this is Rare, this is Me.” 1 in 17 people will be affected by a rare disease at some point in their lives. He also managed, with support to care for his wife who was terminally ill and his sister who had Down’s Syndrome and dementia. Over the years his symptoms got worse making it difficult to cope in work and at home.