Telethon (Fondazione Telethon)
Fondazione Telethon funds three scientific research institutes (TIGEM, HSR-TIGET, and DTI) and one technological research institute (Tecnothon), where excellent and highly competitive research is conducted at an international level. Funding for the research conducted within the Telethon institutes has a duration of 5 years and is subject to rigorous evaluation. There is also a call for applications specifically aimed at selecting and funding researchers who will become part of the Dulbecco Telethon Institute (DTI), Telethon’s career program. Once a project has passed selection, the Telethon Foundation guarantees salaries and research funding for 5 years, at the end of which another rigorous evaluation process must be passed in order for the funding to be renewed.
The first institute founded by Telethon was inaugurated in 1994. Located in Naples under the direction of Andrea Ballabio, its mission concentrates on understanding the mechanisms underlying genetic diseases to then develop strategies for prevention and treatment. The diseases TIGEM research projects focus on include forms of retinal degeneration, intracellular traffic defects, lysosomal storage diseases, hepatic metabolism, and ciliopathies. The excellent quality of research conducted at TIGEM has also been proven by the institute’s ability to attract funding from prestigious international agencies.
13 group leaders work at TIGEM. The scientific staff includes 170 people, and 10 staff members handle the administration. Telethon has invested a total of € 49.7 million in this institute.
This institute is located in Milan and was inaugurated in 1995. Directed by Luigi Naldini, it is a center for excellence in gene therapy applied to genetic diseases. More specifically, the areas studied here include: primary immunodeficiencies and certain autoimmune diseases, leukodystrophies and other lysosomal storage diseases, thalassemia, and hemophilia. The success achieved through the clinical protocol for gene therapyregarding ADA-SCID – a serious form of congenital immunodeficiency – has lead to extremely significant prospects in treating a number of rare diseases.
15 group leaders work at HSR-TIGET with 79 scientific staff members, 27 clinical, and 10 administrative. Telethon has invested a total of € 47.9 million in this institute.
Established in 1999, the DTI does not have a physical location but is a program created for the purpose of giving a select group of researchers the opportunity to pursue an independent career in Italy. Named in honor of Renato Dulbecco, winner of the Nobel Prize for Medicine, the DTI recruits brilliant researchers with a promising future and guarantees them a salary and research funding for 5 years, allowing them to work at the Italian institutes of their choice. The DTI researchers’ work does not focus on any one topic in particular, but all have the common denominator of research on genetic diseases.
As of today, the Dulbecco Telethon Institute has recruited a total of 31 researchers and employed a total of 370 people including recent graduates, doctorate students and post-doctorates. Telethon has invested a total of € 31.6 million in this program.
The Telethon Network of Genetic Biobanks (TNGB) has been founded in 2008 by 7 Biobanks supported by Telethon Foundation, whose purpose is to collect, preserve and offer to the Scientific Community, and to Telethon-funded investigators in particular, biological samples and related clinical data from individuals affected by genetic diseases, from their relatives or from healthy control individuals.
At present, the Network is constituted of 11 Biobanks.
The aim of the Network is to coordinate and manage the Biobanks’ activities in order to enhance synergy and to provide scientists with an effective service responding to the highest quality standards, according to rigorous ethical principles complying with Italian laws and International Recommendations.
In addition, TNGB has actively worked with UNIAMO (Italian Federation of Associations of patients with rare diseases) and other national Associations to raise their interest in Biobank services: currently 11 agreements between a TNGB Biobank and a Patients’ Association have been signed.
List of the scientific publications acknowledging the TNGB services.