The Global Leukodystrophy Initiative aims to accelerate the discovery of novel genetic variations responsible for pediatric white matter abnormalities and translate these findings into clinical diagnostic tools and treatments.

 

A Brief History


The Global Leukodystrophy Initiative (GLIA) was founded in 2013 to bring together clinicians, researchers and advocacy groups to focus and improve both clinical care and research.

Coming together is a beginning. Keeping together is progress. Working together is success.
— Henry Ford

The founding members recognized that in order to tackle the monumental challenge of identifying, diagnosing, and treating children affected by white matter abnormalities - a group of disorders that scientists still do not fully understand - it would be necessary to establish a global network of experts, in order to share ideas, exchange information about unsolved cases, and accelerate scientific discoveries.

Objectives


  1. To develop a biorepository of clinical data, MRI images, and biologic samples for both solved and unsolved leukodystrophies;
  2. To identify novel nosologic entities among cases of unsolved leukodystrophies, and use banked samples to identify new molecular etiologies;
  3. To collect natural history data on individual leukodystrophy cases in order to provide a natural history cohort for future clinical trials;
  4. To rapidly identify existing cases of rare disorders for enrollment in clinical trials being conducted by GLIA members;
  5. To provide collaborative support to the development and testing of emerging therapies in this population.

Fast Facts


Year Founded – 2013
Members – 65
Clinical Sites – 24
Countries Represented - 7
 

INTERESTS

Clinical Standards of Care
Clinical Trials
Laboratory Research
Patient Advocacy
Policy (ex. Newborn Screening)

SERVICES

Centers of Excellence
Research Conferences
Family Conferences
Bioegistries
Clinical Trials
Referral Network