For 27 years, the first weekend of December has been devoted to a real charity television marathon, which raises the funds essential for the genetic disease research, very long and expensive.
This year, at the foot of the Eiffel Tower, the Champ-de-Mars esplanade will be illuminated and a “crystal bubble” will welcome families, artists, researchers and television hosts to raise the solidarity counter while over the course of a 30-hour televised marathon.
31 ongoing trials
Last year, more than 89 million euros in donations were recorded by the French Association against Myopathies (AFM): an amount greater than that of the pledges at the end of the 27th edition.
For this 28th edition, the Telethon is funding 31 therapeutic trials, in progress or in development: they concern some twenty rare diseases affecting the blood, brain, muscles, liver and even sight. At the end of 2013, a new gene therapy trial started in children suffering from Sanfilipo’s disease, an extremely severe and incurable neurodegenerative disease.
The telethon in figures
– 6000 to 8000 rare genetic diseases. Most are serious, chronic, disabling and life threatening from childhood.
– 80% of these rare diseases are genetic.
– 3 million people concerned in France, 30 million in Europe.
– 30,000 new cases per year in France.
– 2/3 of patients wait between one and five years before being diagnosed.
Read also
Telethon: we no longer stop gene therapy
Telethon: the results of 25 years
