Telethon is a major Italian charity and is responsible for raising and distributing funds for biomedical research in Italy. The mission of Telethon is to advance research towards diagnosis, prevention and cure of human genetic diseases. During the first eleven years of activity, Telethon has invested a total of about 143 million Euro in research.
Telethon-funded researchers, alone or in collaboration with other laboratories, have successfully identified and characterized the genes and the mechanisms involved in several hereditary diseases and have reached important clinical achievements.


The first Telethon (Television Marathon) was inaugurated in the United States in 1966 by actor Jerry Lewis with the aim of raising funds for muscular dystrophy. The huge success of the show led the French dystrophy association AFM to repeat this experience in France in 1987 which was equally successful. In 1990 AFM granted the right to use the Telethon trademark in Italy to a the Comitato Promotore chaired by Mrs. Susanna Agnelli, under the auspices of the Italian muscular dystrophy association, Unione Italiana per la lotta contro la Distrofia Muscolare (UILDM). Fund-raising depends primarily on a 32-hours solidarity marathon presented in December on RAI TV channels, but also relies on different events taking place during the year, as well as on corporate donations.

In May 1998 Telethon has been recognized as an ONLUS (Organizzazione Non Lucrativa di Utilità Sociale), a status that qualifies Charities complying to the requirements established by Italian law 460/97.

Research funding and the Scientific Committee

Telethon supports scientists within academic institutions throughout the country to work on a wide range of projects in the fields of genetic, biochemical, biophysical, molecular biology, cell biology and clinical research, as well as in gene therapy. This extensive and forward-looking research program is carefully coordinated with the review of a scientific committee, an international panel of independent experts who evaluate all research proposals received by Telethon, ensuring the highest quality and the greatest potential for translation into treatment for patients.
In its first ten years of activity, Telethon has funded more than 1,566 research projects, 240 fellowships and created three research Institutes, for a total of 143 million Euro.

The three research Institutes are:

TIGEM (Telethon Institute of Genetics and Medicine), which is devoted to the study of human inherited diseases, with a particular emphasis on gene identification and functional studies. Eye development diseases and different neuromuscular, developmental and metabolic disorders are currently the targets of TIGEM's investigations.

HSR-TIGET (San Raffaele-Telethon Institute for Gene Therapy of Genetic Diseases), a joint venture with San Raffaele, focused on the development of gene therapy protocols for inherited diseases. Its activities are detailed in another section of this brochure.

TECNOTHON, a technology laboratory focused on developing highly innovative aids for the disabled.

In addition, Telethon has initiated a Career Award Program in 1999 with the aim of allowing independent researchers to settle their activity in Italy through a renewable five-year salary and research grant.

Besides HSR-TIGET Telethon funds several research projects carried out at the San Raffaele Science Park, and supports a YAC Screening Center and a Core Facility for Mouse Conditional Mutagenesis. The latter was set up to provide transgenic and knock-out mice to Telethon grantees.

Telethon people

Board of Trustees
Susanna Agnelli, President
Omero Toso, Vice President
Carlo Ferdinando Carnacini
Salvatore Di Mauro
Pietro Spirito

Niccolò Contucci, Chief Communication and Fund-raising Officer
Angelo Maramai, Chief Administrative Officer
Francesca Pasinelli, Chief Scientific Officer

Via G. Saliceto, 5a - 00161 Roma, Italia
Tel. +39 06 440151
Fax +39 06 44202032

Via Nino Bixio 30 - 20129 Milano, Italia
Tel. +39 02 2022171
Fax +39 02 20240688