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MAGNETIKO
Telethon Italy was founded in 1990 by a patients' association, the Italian Union Against Muscular Dystrophy (UILDM), with the aim of funding research on muscular dystrophies. Two years later, Telethon extended its mission to all human genetic diseases, meeting the urgent need of a multitude of families and patients affected by genetic disorders that were left behind by public and private investments.
Telethon has two distinct yet complementary organisations: Comitato Telethon Fondazione Onlus (CTFO) and Fondazione Telethon (FT). CTFO and FT are private non-profit organisations recognised by the Ministero dell'Università dell'Istruzione e Ricerca (Ministry of the University of Instruction and Research). The mission of the two organisations is one and the same but the organisations are totally separate legal persons with a clear division of roles. To elaborate, Comitato Telethon is devoted to raising fund and assigning those funds to research projects, while Fondazione Telethon manages the various research activities. Telethon's structure is made up of a political body, the Administrating Council, and a specific operational structure.
Comitato Telethon Fondazione Onlus is a non-profit organisation whose main statutory aims is financing scientific-medical research on genetic diseases. Comitato Telethon works towards increasing the awareness of public opinion and raises funds for financing outstanding research projects. The principle institutional activity is that of distribution. Using a very strict mechanism, Comitato Telethon selects the most innovative projects that could lead to furthering the knowledge of the genetic diseases field and, hopefully, concluding in new therapies. Funds are destined to both external research projects; i.e. researchers working in non-profit public or private research institutions and internal research projects; researchers working in one of the Telethon Institutes. Comitato Telethon is also involved in various fund-raising activities and editorial initiatives. It is through these editorials that the general public is kept informed about Telethon's institutional activities and other information and research concerning genetic diseases.
Fondazione Telethon (Telethon Foundation) is a non-profit organisation created by Comitato Telethon in 1995. The aim was to clearly divide the roles played by the organisation dedicated to raising funds and their consequent assignment to research projects (the Comitato) and the organisation dedicated primarily to research initiative management. This took place at about at the same time as the establishment of the first Telethon research Institute. The Institutes directly managed by the Fondazione Telethon are:
- The Telethon Institute of Genetics and Medicine (TIGEM), the HSR-Telethon Institute of Gene Therapy (HSR-TIGET), the Dulbecco Telethon Institute (DTI) and Tecnothon.
Tecnothon is the technology research lab of Telethon. Its mission is to plan and to manufacture functioning prototypes of auxiliary equipment for the physically disabled, either by inventing new ones or by ameliorating the existing ones. Tecnothon's projects follow a special pathway: they are patented and accompanied by a production study, and then they are given for free to production plants. Tecnothon selects the production plants on the basis of their willingness to manufacture and sell the auxiliary equipment for an ethical price. The laboratory is located in Sarcedo (near Vicenza).
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