Daniel Tanesse and his wife both suffer from Charcot-Marie-Tooth (CMT). Daniel Tanesse first joined Charcot-Marie-Tooth France as a Regional Delegate 20 years ago.
He later became its Referent for Congress and now serves as its Vice-President. He is also one of the founders of the CMT Europe Consortium which aims, inter alia, at supporting all European CMT associations, enhancing patient representation, and helping researchers and laboratories to find volunteers for future therapeutics trials.
In November 2017, he was elected Chairman of the European CMT Federation. He has himself been and still is involved in therapeutics trials for CMT: as a member of the ethical committee for the acid ascorbic trial (2004), as an investigator for the PXT-3003 trial (Phase III still current), and as a scientific and technical correspondent with the candidate drug called IFB-088 from InFlectisBioScience laboratory.