Telethon was born in Italy in 1999 when the Italian Union for the Fight Against Muscular Dystrophy (Uildm) called on Susanna Agnelli to bring the initiative in the country, with the objective to finance and foster the scientific research on genetic diseases – quite rare and overlooked by the most important public and private funding programs.
With the funds raised, especially thanks to the TV show broadcasted in the whole national network, the Telethon Foundation (the entity that manages the tele-marathon, the fundraising and the research activity) has marked important milestones for the Italian research. One of the greatest scientific results achieved is finding the cure for an extremely severe immunodeficiency, the ADA SCID – the disease that forces sick children to live in sterile isolation (this is why ADA SCID patients are called “bubble children”). Telethon enjoys high recognition around the world and it is considered to be an example of Italian excellence, mainly due to the transparent funds management and the meritocratic fundraising mechanism.
Awarded by the “Alto Patronato del President della Repubblica”, currently Telethon is chaired by Luca di Montezemolo.

Telethon’s mission and vision: to advance biomedical research by committing to cure the muscular dystrophy and other genetic diseases; to render all study results, achieved after years of excellent and sustained research activity, available as cure therapies.

Telethon’s Key Figures:
323 million euro invested in research
2 261 research projects sponsored by Telethon
454 studied diseases
7 393 articles published by Telethon researchers, in international scientific magazines
3 research institutes founded – The Telethon Institute of Genetics and Medicine, based in Naples (Tigem), The San Raffaele Telethon Institute for Gene Therapy, based in Milan (Hsr-Tiget) and The Dulbecco Telethon Institute (Dti)
1 applied research laboratory which develops and implements supporting projects dedicated to disabled people (Tecnothon)

Values and key concepts representing Telethon’s strengths and strategic positioning:
Our values are:
Ethics: shared and beneficial social utility available to all
Transparency: Telethon makes its turnover reporting clear and accessible to everybody, it explains how the funds raised were invested and what were the results achieved in the research conducted thanks to the availability of such funds (a system that manages resources in an effective and impartial way)
Continuous improvements: a value recalling progress that originates in our mission and it is valid at an universal level, being applied not only to the health problem.
Merit: carries out the message: “Telethon values talents ”

Our key concepts are:
Italian excellence: bespeaks the significant scientific contribution brought by Italy and its “national pride” while communicating the highly competitive telethon research, at an international level.
Investment: sends across the message that scientific research on genetic disorders is an investment done for the collective future and not only for those directly affected by such pathologies.
Care: the warmest concept of all, embedding its whole extended meaning, it translates into taking care of the patients and their families, improving health and life quality, finding a cure but also working towards making the cure available. It also refers to “doing things carefully”, therefore in a very efficient and meritocratic way.