European Leukodystrophies Association (ELA)
SIRET number : 387955917 00035
APE code: 9499Z Activities of other associatives organizations
Head office: 2 rue Mi-les-Vignes – CS 61024 – 54521 LAXOU CEDEX - France
Phone number: 03 83 30 93 34
Fax: 03 83 30 00 68
Pascal PRIN, President of the Association – Founding member
SAS with a capital of 40 000 €
Registered at RCS Clermont-Ferrand with number 432 701 639
Head office: 46 rue du Ressort, 63967 Clermont Ferrand Cedex 9 - France
The web platform:
Leuconnect is an online platform dedicated to the management of an e-cohort of patients and their families concerned by Leucodystrophies (rare genetic diseases of the nervous system), facilitating their access to clinical trials.
The web platform is registered at the CNIL-France (Commission for Data Protection and Liberties), number 1929198.
Leuconnect legal framework complies with the rules on protection of persons related to the treatment of personal data, in compliance with the modified law 78-17 of January 6th, 1978 (« Loi Informatique et Liberté ») on computers, files and liberties, and General Regulation on Data Protection UE2016/619 RGPD.
ELA is responsible for the treatment of personal data collected using the platform Leuconnect.
In accordance with the law, and with proof of your identity, you have a right to access, rectify, modify or suspend personal data, and a right to data portability. For legitimate reasons, you can oppose the treatment of your personal data, in whole or in part, or you may withdraw your consent.
You can exercise your rights concerning your personal data, by email at: firstname.lastname@example.org, delegated by ELA, as the healthcare data host, to manage these rights.
An authentication cookie is used on the framework Leuconnect. It is used only for the correct operation of the platform Leuconnect and visit statistics.