Talk 10: Italian Best Practices and Update on 2022 Activities

Giulia Bizzotto

Associazione Spina Bifida Italia, ASBI Italy

Background: Associazione Spina Bifida Italia (ASBI) was born in 1989 and founded by some parents of children with Spina Bifida (SB) with the aim to improve the life of people living with the condition. It became a national association in 2007 and from then it has always tried to build a strong network with regional/local associations for Spina Bifida but also with companies, institutions and supporters in general.

Methods: Today ASBI is active in the Italian territory with several activities during the year and it covers numerous Spina Bifida related topics, especially on prevention, counselling and facilitating the social integration and employment of people living with SB, through winter/summer camps as well as projects directed to young people, minors and women.

Results: In 2022 ASBI has organized numerous activities and events, some of them listed below:

Conclusion: ASBI organizes lot of events and activities during the year and focuses especially in strengthening the collaboration with its partners both locally, nationally and more widely in Europe. There are of course lot of other projects ASBI is willing to plan, involving different stakeholders, such as the Italian SB Centers as well as school personnel.

Sport activities. The Winter Camp in January in collaboration with FreeRider Sports Events & the Adventure Camp in June, addressed to minors from 12 to 16 y/o which was the first inclusive camp involving both people with and without disability. Participants developed skills in contact with nature, shared experiences with their peers and tried new adventures such as canoeing and pitching a tent; ASBI has entered into an agreement with Handytech, a company specializes in the design and construction of equipment for driving and transporting people with mobility difficulties. The collaboration aimed at disseminating information regarding the preparation of vehicles for driving or transporting people with motor disabilities, tax breaks and obtaining special licenses as well as the participation at specific events. ASBI reserves to all its members, a 10% discount on the national list prices to be used within the network of Handytech Authorized Centers; Update on the Italian Registry. 700 patients’ data are being loaded on the platform “RegistRare” of which almost half of them thoroughly. Follow up meetings (National Congress of the Italian Spinal Cord Injuries Society in November) will be organized to evaluate the progresses of the project and increase awareness amongst other Spina Bifida Centers.