Dr Barbara Butzeck is a medical radiology specialist. At the age of 40, she was diagnosed with haemochromatosis, having symptoms of tiredness, joint pain, diabetes, irregular heartbeat, dysregulation of hormones and liver fibrosis. In 2001, Barbara joined the Board of Hämochromatose-Vereinigung Deutschland, the German haemochromatosis society and has been the chair since 2002. HVD became a member of EFAPH (the European Federation of Associations of Patients with haemochromatosis) in 2005, and in 2009 Barbara was elected as EfAPH’s president.
Her main vision has been to promote research on haemochromatosis arthropathy. The international HARI (Haemochromatosis Arthropathy Research Initiative) group was established in 2016 in London to realise this vision. In 2019, Barbara stepped back from the EFAPH presidency, remaining on the board as vice president. She was elected to the board of Haemochromatosis International in 2015, serving as trustee for five years before stepping down in 2020.