The association
Life of the association
Composition of the Board
Officers
General Meeting and Extraordinary General Meeting
Scientific Council
The association
The association fights against the rare and severe Lafora disease affecting teenagers.
It was founded in 1995 by the father of a sick child in Antibes (J.O. 25/10/1995).
It is a national association governed by the law of 1 July 1901, recognised as being in the public interest.
Over the years, the association has contributed to the funding of various research projects, and has worked hard to raise awareness of this monstrous disease through various events.
Life of the association
You can support our association by becoming a volunteer, either on a permanent or occasional basis (event creators or participants).
Help us by organising or taking part in events.
All suggestions are welcome.
If you are interested, please contact us
Composition of the Board
The Board of Directors comprises the following 9 members:
- Véronique GADOMSKI
- Pierre-François GADOMSKI
- Marina VLACHOS
- Christophe LUCAS
- Cédric FONTY
- Fabrice FRANCOIS
- Christine RICHARD
- Marion BORDINAT
- Sébastien BORDINAT
Officers
The Executive Committee is made up of the following 6 members:
President : Véronique GADOMSKI
Vice-President : Pierre-François GADOMSKI
Secretary : Marina VLACHOS
Assistant secretary: Christophe LUCAS
Treasurer : Cédric FONTY
Deputy Treasurer : Fabrice FRANCOIS
General Meeting and Extraordinary General Meeting
Scientific Council
Composition of our Scientific and Medical Board
Experts at our side…
To maintain links with research and clinical and scientific advances in Lafora disease, the Association set up a Scientific and Medical Council (CSM) at the beginning of 2024.
Our mission::
- To identify and put families of sufferers in touch with each other..
- To inform the public and raise awareness in the medical community about the existence of the disease, its diagnosis and current research.
- Raise funds to subsidise the most advanced research teams working on the disease.
Our association is a member of :
They support us :
