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AIGlico - Associazione Italiana Glicogenosi

n October 1996 the “AIG-Italian Glycogenosis Association” was born. The idea of ​​setting up an association stems above all from the need of parents of children with glycogenosis to break down the loneliness caused by the rarity of the disease. Promoters of this idea are Dr. Fabrizio Seidita, pediatrician, and dr. Ezio Giacomo Aceti, psychologist, both fathers of children with glycogenosis, who together with six other parents, mainly from Lombardy or followed in hospitals in Milan or Genoa, give life to AIG. Initially Dr. Aceti and Dr. Seidita managed to recover the contacts of 20 families with children with glycogenosis, especially liver and then, over the years, the Association has also expanded to the rest of Italy and to the various forms of glycogenosis. Initially the objectives of the Italian Glycogenosis Association are: get out of isolation and get more information about the disease; push gene research; be present at an institutional level (at the Ministry and at the ISS) In 1998 the first proposal was presented by the Gaslini Institute of Genoa to study a gene therapy for type 1a. With the advent of the internet and social networks, the need of families to find information on the disease is more easily satisfied, therefore the aims of the Association have changed, moving towards services for members. This is how we start with psychological support thanks to Dr. Aceti and with the lawyer up to today with the rehabilitation and respiratory physiotherapy projects. Today there are also many interventions to solve patients' problems with their own healthcare companies, with the school or with the INPS.

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