Fondazione Telethon

Fondazione Telethon

Since 1990, thanks to the encounter between Susanna Agnelli and the Italian Union for the Fight Against Muscular Dystrophy (Uildm), the tele-marathon came to Italy too, on the RAI network. It soon became a fixed event, ready to repeat and surpass itself every year. With the funds raised Telethon scientists have achieved important scientific results and international recognition: steps along a path that leads to curing genetic diseases.

Our mission is:
To advance biomedical research
Right from its beginning Telethon publicly announced that its objective was to assist the growth of  excellent scientific research in Italy.

Commitment to treating muscular dystrophy and other genetic disorders
We fund research into genetic disorders, and hereditary pathologies that affect between 24 to 36 million Europeans (in Europe 25) that are often neglected  by public funded research and the pharmaceutical industry. In 20 years of research many important results have been achieved. Above all in the treatment of the fourteen children affected by Ada-Scid, a terrible genetic disorder that affects the immune system.

Our vision for 2015 is:
Make available as therapies the results of excellent research selected and sustained over time
In order to put an end to the neglect and disregard of rare disorders a step at a time, we must continue to fund research of excellence and help it to move as much as possible towards reaching clinical application. Once the validity of a therapy has been demonstrated, it is necessary to complete further steps to make it accessible: the industrialisation, production and distribution of the therapy. This stage requires large monetary investments and specific areas of expertise, especially by an industry that generally does not take rare disorders into consideration.

Telethon also have a scientific office at

Via Nino Bixio, 30 – 20129 Milano


Website www.telethon.it

Call + 39 02 202217 214
Fax +39 02 20240688

 

Anna Ambrosini Anna Ambrosini

Anna Ambrosini, PhD, is coordinator of the activities of the Italian TREAT-NMD partner Fondazione Telethon (FTELE). She works by the Telethon Scientific Office in Milan where she is responsible for the development of programs of research on inherited neuromuscular disease, particularly targeting clinical research.

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Call + 39 02 202217 214

 

Alessandra Ferlini Alessandra Ferlini

Alesandra Ferlini is a professor in medical genetics, director of the Medical Genetics section at the University of Ferrara (Italy), and coordinator of the EU funded BIO-NMD project. Her experience is in genetics of muscular disorders, and leads both research and innovative molecular diagnosis projects.  Within the context of the EU, she is member of TREAT-NMD ethical committee, of the European NeuroMuscular Centre , and partner of the NMD-CHIP EU project. She is granted by the Telethon Italy and other National funds.

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Enrico Bertini Enrico Bertini

Enrico Bertini MD (Neurologist): leading the Unit of Molecular Medicine, the section on Morphology, and the Neuromuscular Clinics.

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Eugenio Mercuri Eugenio Mercuri

Eugenio Mercuri Md PhD (Associate Professor in Pediatric Neurology): areas of expertise: congenital muscular dystrophy, outcome measures and assessment tools in neuromuscular disorders.

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Sonia Messina Sonia Messina

Sonia Messina, MD and PhD - Neurologist areas of expertise: congenital muscular dystrophy, outcome measures and assessment tools in neuromuscular disorders.

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Call 0039/090/2212793

 

Lucia Monaco Lucia Monaco

Dr Lucia Monaco is Chief Scientific Officer of the Italian Telethon Foundation.

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Call 02 2022 17 200

 

Luciano Merlini Luciano Merlini

Luciano Merlini MD (Neurologist): formerly chief of the Neuromuscular Unit of the IOR, Bologna, now works as neuromuscular consultant in the Medical Genetic Unit of the University of Ferrara.

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Elena Mazzone

 

Mary Wang Mary Wang

Mary Wang is a Research Program Manager in the Scientific Office of Fondazione Telethon, Italy. She is the contacts person for administrative management of EuroBioBank. At Telethon, she also oversees the program support for the Telethon Network of Genetic Biobanks (TNGB), and all other biobank related activities.

Mary received her PhD in Cell Biology from University College London, UK in 2008. After the completion of her PhD she worked on research projects both in the UK and Italy, as well as being involved in EU large integrated projects. She has a strong interest in genetic diseases of the immune system and blood.

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Call +39 0220 2217204