Download the program of the 2014 ELA Families / Scientists meeting

Written on Friday 7 March 2014

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.

This year the meeting will take place on April 5 & 6, 2014 in Paris, France.








Saturday April 5, 2014

8:30 AM                Welcome

10 AM-1 PM         General assembly of the association

1-2:30 PM             Lunch

2:30-4:30 PM        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*

5-7 PM                   Plenary session “Patients as research players


Sunday April 6, 2014

10:30–12 PM         Forum : “Prevention, Care & Accompaniment”
Topic: Siblings and handicap

12:30 PM                Lunch

*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