ELA in France



Each week in France, 3 to 6 children (20 to 40 in Europe) are born with these diseases. Since its inception, the association has funded 414 research programs for a total of 32.8 million euros. Support research is a priority. But the association also aims to help families affected by the disease in their daily lives.

Click here for ELA missions.

Image des familles d'ELA rassemblées à Center ParcELA is a link between all leukodystrophies and a support network for families. It is also part of an international network of information and research through its regular and constructive relations with its counterparts worldwide.

 

 

 

To move faster toward healing, ELA has created a research foundation dedicated to leukodystrophies and myelin repair. It brings together the best specialists worldwide.

 

To better understand the association ELA, find here our short presentation video…

Join ELA on :

 

ELA Board



Board 2016

Pascal
PRIN

Chairman


Guy
ALBA

Honorary President

Philippe
LEVILLAIN

Vice-Chairman

Gérard
POLLET

Vice-Chairman

Delphine
MARIOTTI

General Secretary

Pascal
NOIROT

Treasurer

Members

Lucas Alba

Lucas
ALBA

Crystelle
COTTART

Gaël
DE MIOMANDRE

Jean-Marc
DI-RADO

Emmanuelle
DOQUET-CHASSAING

Myriam
LIENHARD

Pascal
LE TORTOREC

Hervé Lucas

Hervé
LUCAS

Estelle Royer

Estelle
ROYER

 Nathalie Verneuil

Nathalie
VERNEUIL

 

Permanent Staff



MANAGEMENT
Pascal Prin

Pascal PRIN

President of ELA France

Contact Pascal Prin




ADMINISTRATION & FINANCE DIVISION

Delphine PERNOT

Administrative & financial manager

Contact Delphine Pernot

Josiane ECKMANN

Secretary accountant

Contact Josiane Eckmann

Stephanie RUSSO

Versatile assistant

Contact stephanie russo

Photo Aymeric Aubert

Aymeric AUBERT

Computer Scientist

 Contact Aymeric AUBERT

Christelle FERRY-LADOUCEUR

Assistant

Contact christelle ferry

Jean-Jacques VIGNERONT

Versatile maintenance worker

Contact jean-jacques vigneront


 

DEVELOPMENT DIVISION
Events

Yann LAURAIN

Event manager

Contact Yann Laurain

Barbara RABOT

Project manager

Contact Barbara Rabot

Pierre Streiff eng

Pierre STREIFF

Project manager

Contact Pierre STREIFF

Management of key figures

Jean-Claude SATTA

Liaison with key figures

Contact Jean-Claude Satta

Photo ELA Marine

Marine PERRY

Project manager

Contact Marine PERRY

 

 

SPONSORSHIP, PARTNERSHIP, communication division
Sponsorship, Partnership

Clementine SLEMBROUCK

Project manager

Contact Clémentine Slembrouck

Portrait Sandra Escude Anglais

Sandra ESCUDE

Project manager

Contact Sandra Escudé

 
Christelle STURTZ
  Project manager Alsace
 Contact Christelle Sturtz
Communication

Pascal JACQUESON

Communication manager

Contact Pascal Jacqueson


SUPPORT FOR FAMILIES DIVISION

Cindy OGER

In charge of supporting families

Contact Cindy Oger

mcbl

Marie-Claude Blondeau

Psychologue
Contact Marie-Claude Blondeau

 

RESEARCH DIVISION

Jean-François DHAINAUT

In charge of research

Contact Jran-François Dhainaut

Philippe FAVEAUX

Research project manager

Contact Philippe Faveaux

Imen DORBOZ

Bioengineering

Contact Imen Dorboz

 

 

Elise Vivier 2

Élise SAUNIER-VIVAR

Scientific Coordinator

Contact Elise SAUNIER-VIVAR

Helene Rochereuil 2

Hélène ROCHEREUIL

Research project manager

Contact Hélène ROCHEREUIL

Samia GUERROUI

In charge of the system information

Contact Samia Guerroui

 

 

Delegates and representatives of ELA for each region



Delegates and representatives of the ELA are most often the families affected by leukodystrophies and myelin diseases. Engaged with the ELA, they bring their witness and participate in awareness.

Delegate of ELA : Mireille Nuss - Geispolsheim (67)

Email : contacter Mireille Nuss

Representative of ELA : Jean-François PLATAROTI - St-Amarin (68)

Email : contacter Jean-Francois Palaroti

Representative of ELA : Christelle STURTZ - Strasbourg (67)

Email : contacter Christelle Sturtz

 

 

 

Delegate of ELA : Christine Forssant - Saint Jean d'Illac (33)

Email : contacter Christine Forssant

 

Delegate of ELA : Florence Tramasset - Ondres (40)

Email :  contacter Florence Tramasset

 

Representative of ELA : Marie-Hélène GILBERT - Biganos (33)

Email : contacter Marie-Helene Gilbert

 

Representative of ELA : Philippe GRENOUILLEAU - Bordeaux (33)

Email : contacter Philippe Grenouilleau

 

Representative of ELA : Alain BARROSO - St-Vincent de Tyrosse (40)

 

 

Representative of ELA : Jean-Marc BARROSO - Bayonne (64)Email : contacter Jean-Marc Barroso

 

Representative of ELA : Francine DELACOTTE - Pau (64)
Email : contacter Francine Delacotte

Delegate of ELA : Marie-Christine Romanet - Bas et Lezat (63)
Email : contacter Marie-Christine Romanet

 

Representative of ELA : Anne-Marie Signori - Romagnat (63)
Email : contacter Anne-Maire Signori

 

Representative of ELA : Audrey MARTIN - ST PAULIEN (43)
Email : contacter Audrey Martin

Representative of ELA : Muriel CANN - Lion sur Mer (14) Email : contacter Muriel Cann

 

Representative of ELA : Isabelle RICHARD - Cagny (14) Email : contacter Isabelle Richard

 

Representative of ELA : Anne-Marie ANNE - Tourlaville (50) Email : contacter Anne-Marie Anne

Representative of ELA : Marie GAUTHEY - St-Apollinaire (21)Email : contacter Marie Gauthey

 

Representative of ELA : Catherine MICHAUD - Gevrey Chambertin (21) Email : contacter Catherine Michaud

 

Representative of ELA : Josette KIRITCHENKO - ST REMY (71) Email : contacter Josette Kiritchenko

 

Representative of ELA : Josiane BERNARD - BEAUNE (21)

Delegate of ELA : Guy et Emmanuelle Le Pennec - Lorient (56)
Email :  contacter Guy et Emmanuelle Le Pennec

 

Representative of ELA : Martine BARTEL - Rennes (35)

Email : contacter Martine Bartel

 

Representative of ELA : Antoine LOUAZEL - Rennes (35)
Email : contacter Antoine Louazel

 

Representative of ELA : Marie-Hélène Levillain – Sargé-lès-Le Mans (72) Email : contacter Marie-Hélène Levillain

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Delegate of ELA : Philippe Levillain – Sargé-lès-Le Mans (72) Email : contacter Philippe Levillain

 

Representative of ELA : Marie-Hélène Levillain – Sargé-lès-Le Mans (72) Email : contacter Philippe Levillain

Delegate of ELA : Joelle Meffre - Tours (37)
Email : contacter Joelle Meffre

 

Delegate of ELA : Georges LAURO - FUSSY (18)
Email : contacter Georges LAURO

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Representative of ELA : Martine POUILLER - Arrou (28)
Email : contacter Martine Pouiller

 

Representative of ELA : Simonne BORJA-LAURO - Fussy (18)
Email : contacter Simonne Borja-Lauro

 

Représentant ELA : Joao LOPES - Saint-Pierre-des-Corps (37)
Email : contacter Joao Lopes

Représentante ELA : Joyce GOSSET - Vescovato (20) Email : Contacter Joyce Gosset

Delegate of ELA : Hervé Lucas – Damparis (39)
Email : contacter Herve Lucas

 

Representative of ELA : Bruno MANGIN – Ornans (25)
Email : contacter Bruno Mangin

 

Representative of ELA : Bénédicte GARRET – COLOMBIER (70)
Email : contacter Benedicte Garret

 

Delegate of ELA : Jocelyne De Colombel – Darnetal (76)
Email : contacter Jocelyne de Colombel

 

Representative of ELA : Dominique MARTIN – Octeville sur Mer (76)
Email : contacter Dominique Martin

 

Representative of ELA : Véronique GALLAY – Le Trait (76)
Email : contacter Veronique Gallay

Delegate of ELA : Anne-Dauphine DE ROSANBO – Issy-les-Moulineaux (92)
Email : contacter Anne-Dauphine De Rosanbo

 

Delegate of ELA : Géraldyn ROUBINET – Nanterre (92)
Email : contacter Geraldyn Roubinet

 

Representative of ELA : Anne DUCASSE – Paris (75)
Email : contacter Anne Ducasse

 

Representative of ELA : Frédéric BONAFOS – Le Perray en Yvelines (78)
Email : contacter Frederic Bonafos

 

Representative of ELA : François MALHERBE – Gazeran (78)Email : contacter Francois Malherbe

 

Representative of ELA : Antoine PRIN – Puteaux (92)
Email : contacter Antoine Prin

 

Representative of ELA : Christine DOUBLE – Gif-sur-Yvette (91)
Email : contacter Christine Double

 

Representative of ELA : Ginette SAUER – Nancy (54)Email : contacter Ginette Sauer

 

Representative of ELA : Sylvie et Xavier SOREL – Boncourt sur la Meuse (55)
Email : contacter Sylvie et Xavier Sorel

 

Representative of ELA : Dany MULLER – Hoste (57)

 

Representative of ELA : Raymond CORDARY – Sarreguemines (57)

Email: contacter Raymond Cordary

 

Representative of ELA : Cécile PARFENIUK – Forbach (57)Email : contacter Cecile Parfeniuk

Delegate of ELA : Gérard Pollet – BERAT (31)
Email : contacter Cecile Parfeniuk

 

Representative of ELA : Marie-Christine et Daniel GOURDRE – RIEUMAJOU (31)Email : conacter marie-christine-et-daniel goudre

 

 

Representative of ELA : Stéphane MARRE – Toulouse (31)
Email : contacter Stephane Marre

 

Representative of ELA : Christian NOILLY – Toulouse (31)
Email : contacter Christian Noilly

 

Representative of ELA : Marie Loiseau – Toulouse (31)
Email : contacter Marie Loiseau

 

Representative of ELA : Jean CASTETS – PESSAN (32)
Email : contacter Jean Castets

 

Delegate of ELA : Guy et Monique Boutten – Nieppe (59) Email : contacter Guy et Monique Boutten

 

Representative of ELA : Patricia et Olivier BIGOT – Ambleteuse (62) Email : contacter Patricia et Olivier Bigot

 

Representative of ELA : Chantal et François DEQUEN – Wasquehal (59) Email : contacter Chantal et Francois Dequen

 

Representative of ELA : Cathy GUERVILLE – Coupelle-Vieille (62)Email : contacter Cathy Guerville

 

Représentante ELA : Justine GUERIN –  Cambrai (59)

Email : Contacter Justine Guerin

Delegate of ELA : Pascal et Anne Le Tortorec – Nantes (44) Email : contacter Pascal et Anne le Tortorec

 

Delegate of ELA : Philippe Levillain – Sargé-lès-Le Mans (72) Email : contacter Philippe Levillain

 

Representative of ELA : Marie-Hélène Levillain – Sargé-lès-Le Mans (72) Email : contacter Marie-Hélène Levillain

 

Representative of ELA : Chrystelle PROUTIERE – Montilliers (49) Email : contacter Chrystelle Proutiere

 

Representative of ELA : Françoise RICHARD-TARDIVEL – Treillieres (44)Email : contacter Francoise Richard Tardivel

 

Representative of ELA : Brice et Nathalie BERNIER – Coueron (44) Email : contacter Brice et Nathalie Bernier

Representative of ELA : Romuald LAMRET – Ohis (02)

Email : contacter Romuald Lamret

 

Representative of ELA : Jacqueline MARECHAL – St-Quentin (02)Email : contacter Jacqueline Marechal

 

Representative of ELA : Isabelle DANJOU – Omissy (02)
Email : contacter Isabelle Danjou

 

Representative of ELA : Brigitte LEBLANC – Argoeuves (80)
Email : contacter Brigitte Leblanc

 

Representative of ELA : Delphine MENDES – Pierrefonds (60)Email : contacter Delphine Mendes

 

Representative of ELA : Dany ROUSSEAUX – Saint-Léger-aux-Bois (60)
Email : contacter Dany Rousseaux

 

Delegate of ELA : Bernard Panza – La Garde (83)
Email : contacter bernard panza

 

Delegate of ELA : Jean-Marc Di-Rado – Allauch (13)Email : contacter Jean-Marc Di-Dado

 

Delegate of ELA : Pascal NOIROT – Saint-Maximin-la-Sainte-Baume (83) Email : contacter Pascal Noirot

 

Representative of ELA : Michel JEAN – VEYNES (05)Email : contacter Michel Jean

 

Representative of ELA : Raymonde JULLIEN – Luynes (13)

Email : contacter Raymonde Jullien

 

Representative of ELA : Jenny GENTAUD – MONTFORT SUR ARGENS (83)
Email : contacter Jenny Gentaud

 

Representative of ELA : Lilia AMROUNI – NICE (06)
Email : contacter Lilia Amrouni

Delegate of ELA : Pierre Favier – Lyon (69)
Email : contacter Pierre Favier

 

Delegate of ELA : Jean-Michel Seyve – Bohas Meyriat Rignat (01)
Email : contacter Jean-Michel Seyve

 

Representative of ELA : Nathalie DELBREL – Vetraz Monthoux (74)
Email : contacter Nathalie Delbrel

 

Representative of ELA : Thierry DUMOLARD – Lyon (69)
Email : contacter Thierry Dumolard

 

Representative of ELA : Marie-Geneviève PIN – Domarin (38)
Email : contacter Marie-Genevieve Pin

 

Representative of ELA : Colette et Matthew SWIFT – ST HILAIRE (38)Email : contacter Colette et Matthew Swift

 

Representative of ELA : Denis VUILLEMARD – Pierre-Bénite (69)Email : contacter Denis Vuillemard