00:00Dr. Menchetti, over the last 25 years, patient associations have funded metabolic disease centers for 5.5 million.
00:10of euros. What gaps did you have to fill?
00:15We as an association and all Italian associations have contributed to the development of reference centers for metabolic diseases
00:24hereditary which are in some Italian regions.
00:28We contributed by financing freelance contracts for metabolic doctors, for their training, for their participation
00:39at conferences.
00:40We have funded research studies on hereditary metabolic diseases and also contracts for dieticians and all those figures, psychologists
00:52even psychologists,
00:53all those figures necessary for the complete management of the patient with hereditary metabolic disease and PKU.
01:00In recent years we have already been asking ourselves for many years what would happen
01:09as our patients reached adulthood
01:12because thanks to neonatal screening children have grown up, lead a normal life and therefore need to be monitored
01:22more so in adolescence and adulthood.
01:26This is a big problem because there are no doctors specialized in adult metabolic medicine, so we had to create
01:36a center in the Tuscany region
01:39that could facilitate the transition of the pediatric patient to the adult center.
01:45We have financed with our own funds the contracts for two medical metabolists, we have financed their training,
01:56However, there are still many critical issues in the care and management of the adult patient as, precisely, as
02:04I was saying, there is a shortage of specialists.
