OUR ACTIVITIES
In conformity with our purposes, during these years the Association’s activity has developed along the following guidelines:
DIVULGING INFORMATION AND FUND-RAISING
- Sensitizing days
- Families being involved in the activities of local press
- Attendance of radio and TV programmes at local and national level
- Organization and partecipation in sporting events
- Specially aimed communication
- Special events
- Organization of 6 National Congresses for technical staff and parents, with italian and foreign experts
- Organization of the 3th World Congress, for the first time, in 2005, in Italy
- Organization of regional days for technical staff and parents to examinate closely the matter
- Publication and spreading of a follow-up protocol for specialists in internal medicine
- Publication and spreading of popular articles in the national specialized medical press
- Publication of the Association’s informative magazine (LINK) for families and technical staff
- economic support to medical and technical staff to attend International Meetings concerning the disease;
- help to develope clinic research in order to improve our knowledge on the clinical features and the natural history of the pathology.
