The 22q11.2 deletion presents a complex clinical picture. Those affected may experience heart and immune defects, palate and speech problems, learning difficulties and cognitive deficits. The risk of developing psychiatric pathologies in adulthood is high, which is why multidisciplinary support throughout the entire lifespan is essential.
Founded in 2002, AIdel22 APS is a Social Promotion Association with legal personality and national headquarters in Rome, supported by a network of 16 regional offices. It is federated to UNIAMO Italian Federation of Rare Diseases and collaborates with Telethon, the Istituto Superiore di Sanità and the National Center for Rare Diseases. At European level he is one of the founding members of the Federation of deletion 22 patient associations, 22q11 Europe.
The association carries out extensive and detailed work: spreading knowledge of the syndrome, supporting families with hospitality and information, promoting the psychological well-being of patients, social inclusion and job placement. Added to this are collaboration with research projects and the development of international relations.
Radio AIdel22: the first web radio managed by young people with a rare disease
Among the most original initiatives is Radio AIdel22 (https://webradio.aidel22.it/), the first web radio entirely managed by young people with rare diseases. Born in 2020, the radio immediately played an educational, technical and personal role: today it involves around thirty young people – speakers and technicians – who curate and create broadcasts with a daily schedule.
Over the years the project has developed a network of relationships and informative programming that tells, informs and creates connections. Radio AIdel22 also promotes the autonomy and personal growth of participants, enhancing self-esteem, emotional management and teamwork skills.
A concrete example of how inclusion, creativity and communication can be transformed into real opportunities for those living with a rare syndrome and for their families.
