Download the program of the 2013 ELA Families / Scientists meeting

Written on Wednesday 20 March 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.

This year the meeting will take place on April 6 & 7, 2013 in Paris, France.




Saturday April 6

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 7

9-10:30 AM Counselling group
Topic : “LIVING the loss of a loved one! BEARING the loss, the (iireversible) absence of a loved one! ACCEPT the idea that there was a “before” and there is now an “after””

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

12:30 PM Lunch

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


Download :

To get information regarding the registration to the meeting, please call +33  3 83 33 48 59 or use the following link :

Contact the ELA association