Register to the 2013 ELA Families / Scientists Meeting

Written on Tuesday 26 February 2013

Each year, the ELA association organizes a meeting for patients and their families. International scientists will attend the meeting where they will present the latest scientific and medical breakthroughs and answer the questions of patients and families. This annual event is a unique opportunity for the patients and their families to gain knowledge and interact with international experts specialised in leukodystrophies and myelin diseases.

The 2013 meeting will take place on April 6 & 7, 2013 in Paris, France.


Tentative program (to be confirmed)

Saturday April 6

General Assembly of the Association

Diseases’ 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 session “Patients as research players*


Sunday April 7

Counselling group

Forum : “Prevention, Care & Accompaniment”
Topic: Sexuality and disability

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


Download :

Family non ELA-members wishing to attend the meeting must contact us prior to February 25, 2013 at the following phone number +33  3 83 33 48 59 or use the following link :

Contact the ELA association