Hungarian Hemochromatosis Patient Association
Hemokromatózisos Betegek Egyesülete
Location: Budapest, Hungary
Email: info@hemokromatozis.hu
Website: https://hemokromatozis.hu/
Our goals are to increase awareness of the disease; to help patients in their everyday lives with dietary recommendations, information about treatment that is understandable to patients, materials compiled by professionals, and experiences shared with each other.
Célunk a betegség ismertségének növelése; a páciensek mindennapjainak segítése: étrendi-diétás javaslatokkal, a kezelésre vonatkozó, a betegek számára érthető információval, szakemberek által összeállított anyagokkal, valamint egymásnak átadott tapasztalatokkal.
In Hungary, hemochromatosis patients are treated by hematologists, hepatologists or gastroenterologists. The first step is diagnosis but too few specialists think about it; it is common for the patient to research and prompt for tests. Bloodletting (venesection) is difficult to arrange in many places, and GP practices are not prepared for it. Hemochromatosis patients who are eligible to donate blood can do so (men 5 times, women 4 times a year) but in the initial period frequent blood donations are not possible at the blood supply center.
Our association helps with the difficulties and uncertainties of those who contact us and we are available via email, phone, our website and Facebook.