The European Locked-‐In Syndrome Federation was born in 2012 following the wish of
national associations. Notably ALIS, the French Association, LISA the Italian Association
and LIS, the German Association. LISEF is registrated in France.
President : Véronique Blandin,
General director of association du locked-‐in Syndrome, ALIS (French association for the LIS).
Vice président : Luigi Ferraro,
Président of locked in syndrome association, LISA (Italian association for the LIS).
General secretary : Karl-‐Heinz Pantke,
President of locked-‐in syndrome association, LIS (German association for the LIS).
10 countries have joined LISEF, some of which are not yet registered as such but only represented either by a expert therapist, either by a locked-‐in person.
The main aim of the federation is to improve the quality of life of the LIS Europeans and fight regional inequalities.
Other objectives are :
to increase awareness about the pathology
to sensibilize political autorities and citizens
to evaluate the services offered to patients in order to improve them
to promote techniques (including communication aids) and scientific research
The federation’s activities also include :
the state of the health care provided in different european countries
to improve the knowledge of the LIS witin the médical field
to create a social and medical protocol
to create a European database gathering all the questions commonly asked by persons
to identify at least one rehabilitation center of excellence for each country
The first action is the creation of the common European questionnary. LISEF will be present in the 19th European congress of physical an rehabilitation medicine ; a special session for the LIS is organized and the european new questionary for the LIS will be discussed by the european experts for the LIS.
LISEF – 241 bd Jean-Jaurès – 92100 Boulogne-Billancourt - France