Bricca and Cocconi
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We were very impressed by the numerous presence of doctors and researchers of these diseases
We have been very attentive to the various interventions that everyone has done, and it’s really awesome to see and feel in person how many diseases there are with similar symptoms and that change the lives of many people, both from infancy and families who suffer for them. Also interesting were the testimonies of parents and some people affected by these diseases (Dan Peach and others).We were interested in our disease (sialidosis) explained very well by D. Azzzo and his staff, our D.ssa Milan, Laura Canafoglia and other people.
We met people who suffer from our own illness and even the Galactosialidosis there were family members who had children affected by this ugly illness which unfortunately has immense deficiencies and very serious
We have been hit by the late salidosis, and we have verified that over the years this disease progresses very seriously.
Unfortunately, our sister Marina was not present, which is also the most serious in terms of speech and path. We have heard about the possibility of a new medication for the care of salidosis regarding PPCA, we hope it is the right therapy to improve this disease that has ruined the lives of many.
We thank everyone, especially you, Dr. D’Azzo and the gentle neurologist Camilo Toro who on the last day of the meeting wanted to meet the families affected by these diseases, to give testimony and to confront us with our illness.
We expect to have good news soon. Thanks for everything.