Sigurdur H. Johannesson
European Association Affiliated with: AHC Association of Iceland – Eurordis (Rare diseases in Europe)
Reasons for being a part of AHCFE: My daughter Sunna Valdis was born in 2006 and got a diagnosis at 13 months. In 2009 the family formed the AHC Association of Iceland and we have since been very involved in the rare disease community both locally and internationally. I produced the documentary Human Timebombs which is a documentary on AHC.
As one of the founders of the AHC Federation of Europe and the AHC International Alliance, I have made it my mission in life to raise awareness about AHC and find a solution to treat the disorder.
Ways to connect: