Maria Abele was diagnosed with haemochromatosis in 1997. After being treated for 10 years the clinic she was attending closed down and she had to find a new centre without help. Finally after searching for a year to find a place where she could get proper treatment she discovered the clinic run by Dr. Judit Várkonyi who had already founded the Hungarian hemochromatosis patient association HBE. At that time the association had financial problems and only able to spread information through meetings. With her background as a computer programmer, Maria was able to build a website for HBE. The following year (2013) she was elected to the chair position and set about getting others involved on the board. Since then Maria Mörtl has been the HBE secretary. They began to run a facebook page, created information leaflets, entered health screening days and began to work on fundraising. HBE built a relationship with the very well organized Hungarian Rare Diseases Federation (HUFERDIS), and received a lot of assistance from them. HBE also received a lot of support from EFAPH, the European Federation of Associations for Patients with Haemochromatosis, learning from more experienced volunteers, and their initiatives and techniques. HBE also joined Haemochromatosis international widening its exposure to haemochromatosis initiatives outside Europe.
After a few years work with the Hungarian Rare Diseases Federation (HUFERDIS) Maria was elected to the Hungarian board. Later Dr. Fancoise Courtois, EFAPH’s general secretary, invited her to represent EFAPH in the European Rare Diseases meeting, the beginning of her EFAPH representative work in Eurordis.
Maria is proud of reaching more and more people in Hungary, helping them to get diagnosed and find proper treatment. The blood of Hungarian therapeutic donors has been accepted by the blood service since 2017. HBE tries to reach GPs through its leaflet aimed at helping them more easily diagnose haemochromatosis. The COVID pandemic of the past few years has forced HBE to do more online.
Maria feels lucky to be involved in haemochromatosis advocacy and her volunteer work in is strengthened by the wonderful people she meets at every meeting in Hungary, and colleagues in EFAPH, HI and Eurordis.