National Conference of Patients and Families with the Wolfram Syndrome (Padua, 25/03/2017)

Thank you all!

This conference cost a lot of work from many people! We would like to thank first of all you who have come (in many cases doing so many miles!), But also all the doctors who thanks to their efforts have allowed us to achieve this first major important step!

Thanks to Professor Vettor, Dr. Maffei (and to the entire hospital in Padua), thanks to Dr. Facchin, Dr. D’Annunzio and Dr. Callus.

Thanks to Tracy Lynch and Stephanie Gebel for taking several planes and being able to be there!

Thanks to the Eolo Group Events for the professionalism with which they organized the technical part and the lunch.

This is not an arrival, but it is a starting point to fight together! Do not give up, we are here and we will always be there!

Introduction:

Professor Roberto Vettor, Dottor Pietro Maffei, Federica D’Elia

The EURO-WABB Project (European Registry of Wolfram Syndrome, Alström, Bardet-Biedl and other forms of rare diabetes):

Dottor Pietro Maffei, Clinica Pediatrica, Genova

Rare diseases, national network and organization:

Professoressa Paola Facchin, Centro Regionale Malattie Rare, Padova

Wolfram syndrome in pediatric age:

Dottor Giuseppe D’Annunzio, Clinica Pediatrica, Genova

Experiences of parents and patients associations with Wolfram Syndrome:

Stephanie Gebel, Snow Foundation USA; Tracy Lynch, Wolfram Syndrome UK

How is a patient association born? Experiences with associations of cardiopathic patients (AICCA, BHM, ECHDO) and Alström syndrome (ASSAI):

Dottor Edward Callus, IRCCS Policlinico San Donato, Milano

Gentian Committee – Research and fight against the Wolfram Syndrome:

Fedrica D’Elia, Giorgio Pagliocchini, Raffaello D’Elia

Open discussion (sharing experiences, curiosity, proposals for the birth of the Italian Association of Wolfram Syndrome …):

Dottor Edward Callus, Stephanie Gebel, Tracy Lynch

Future Programs and conclusions

Professor Roberto Vettor, Dottor Pietro Maffei, Federica D’Elia