Register to the 2014 ELA Families / Scientists Meeting

Written on Wednesday 5 February 2014

Each year, the ELA association organizes a meeting for patients and their families. Many researchers coming from all around the world will present the latest scientific and medical advances and answer the questions of patients and families. This annual event is an exceptional opportunity for patients and their families to interact with scientists specialised in leukodystrophies and myelin diseases and learn from their diseases.

The 2014 meeting will take place on April 5 & 6, 2014 in Paris (France).


Tentative Program (to be confirmed)

Saturday April 5

General Assembly of the Association

Scientific workshops

  • Workshop on ALD/AMN*
  • Workshop on Refsum disease*
  • Workshop on MLD*
  • Workshop on Krabbe disease*
  • Workshop on CACH syndrome, Alexander disease, MLC and Canavan disease*
  • Workshop on PMD and other hypomyelinating leukodystrophies
  • Workshop on undetermined leukodystrophies*
  • Workshop on Aicardi-Goutières syndrome*

Plenary sessionPatients as research players


Sunday April 6

Counselling group (to be confirmed)

Forum: “Prevention, Care & Accompaniment”
Topic: Siblings and handicap

*A translation service English/French, French/English will be available during the meeting.



To obtain the meeting registration procedures, non ELA-members families must contact us prior to February 28, 2014 at the following phone number +33 3 83 33 48 59 or using the following link:

Contact the ELA Association