Support the families concerned by leukodystrophy

Be suffering from leukodystrophy, an orphan genetic disease, serious, progressive, debilitating and particularly destructive, upsets his own life and that of his family. Indeed, families should move closer to agencies and services that previously could they be completely unknown.

The association does not pretend to answer all questions but wants families to bring them the information they need to understand the best of all their rights and their obligations. Our teams are available to families for support and respond better to their expectations and their personal situation.

Support medical research

The aim of ELA is to help French and international research laboratories better understand the mechanisms of the disease, identify the genes responsible for it and develop new therapeutic strategies to combat leukodystrophies.

Each year, ELA issues a call for proposals and invites the international scientific community to submit research projects in the field of genetic leukodystrophy, white matter brain damage and myelin repair.

Regularly, ELA organizes a scientific congress bringing together the leading international experts in leukodystrophy and myelin repair. This event provides an opportunity to review the latest findings in the field and to promote exchanges and collaborations between laboratories.

A symposium dedicated to patients and their families is organized every year. On this occasion, specialists in leukodystrophy give a popularized information on the advances of the research and answer their questions. It is a unique moment of exchanges between researchers, families and patients.

ELA is the leading provider of leukodystrophy research. To date, 571 research projets have been funded for a total of €48.8 million.

Raise public awareness

Many events punctuate the life of the ELA association. They help to raise awareness of leukodystrophies among the general public and make a major contribution to collecting donations for the fight against these diseases.
ELA operates mainly thanks to funds raised from the generosity of the public. This shows just how essential everyone’s help is in these events.

International development

One of the ELA missions aims at extending worldwide, Since 2000, ELA has promoted the creation of new structures all over Europe and in May 2012 opened an Indian Ocean ELA branch on Reunion Island.

Nowadays, ELA exists in Germany, Belgium, Spain, France, Italy, Luxemburg, in the Indian Ocean and Switzerland. They also keep relationships with counterparts in Europe and the USA.

In order to federate the action of all the ELA structures and because the research against leukodystrophies is worldwide, international ELA was created in 2015 to increase their action in Europe and all over the world.