John Forman - NZ Rare Disorders Organisation

John Forman is the founder and executive director of the Organisation for Rare Disorders, a not-for-profit group set up to help rare disease families through the health and disability system and to promote research into rare diseases. He founded the organisation 14 years ago, but his journey in the world of rare disorders began over 40 years ago, when he and his wife Judith had twins - Tim and Hollie, who were born with the rare lysosomal storage disease alpha mannosidosis. It was a lonely time for the couple - there was a lack of knowledge of the disease for many years - in fact the twins were 17 when they were finally diagnosed with the disorder which affects just one in a million. Over the years, John Forman, has been a tireless advocate for families of patients with so-called orphan illnesses- for drugs to be funded, for better research, and for better funding for carers.