Dr Barbara Butzeck
I am medical radiology specialist. At the age of 40 I was diagnosed with Hämochromatosis having symptoms of tiredness, joint pain, diabetes, irregular heartbeat, dysregulation of hormones and liver fibrosis. In 2001 I joined the Board of Hämochromatose-Vereinigung Deutschland, the German haemochromatosis society and have 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 I was elected as President. My main vision was 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 I stepped back from the EFAPH presidency, remaining on the board as vice- President. I was elected to the board of Haemochromatosis International in 2015, serving as trustee for five years before stepping down in 2020. During this time I was involved in the development of Therapeutic recommendations in HFE hemochromatosis for p.Cys282Tyr