Hämochromatose – koVereinigung Deutschland e.V. , (HVD)
Haemochromatosis Association Germany (HVD)
Location: Cologne, Germany
Email: kontakt@haemochromatose.org
Website: https://www.haemochromatose.org/
The HVD supports people with genetic haemochromatosis through the dissemination of information, and the provision of opportunities to share experiences and learn from experts through video-conferencing or face to face meetings.
Die HVD unterstützt Menschen mit genetischer Hämochromatose durch Informationen, Möglichkeiten zum Erfahrungsaustausch, Lernen von Experten in Mitgliederversammlungen per Video-Konferenz oder persönlich.
In Germany there are an estimated 80,000 to 200,000 people with genetic haemochromatosis; this number is estimated because there is no formal register. Our association has about 450 members, paying an annual fee. We organize 4-5 meetings via video-conferencing each year as well as several regional face-to-face-meetings.
Each year we organise a weekend meeting with presentations from experts and time for private exchange between patients and their partners and family members.
Our board is elected every 3 years with a president, vice-president, secretary, and treasurer. Board members are all volunteers, we have one paid staf member, and a scientific board consisting of experts in hepatology, rheumatology, transfusion medicine, human genetics and hematology.
Our members often report joint and bone disease, as well as problems with access to phlebotomy/venesection because of (1) the retirement of physicians leading to the closing of medical facilities and (2) reimbursement for treatment is inadequate and thus providing the service is non-viable.