Resources
ALEXANDER DISEASE BROCHURE
ALEXANDER DISEASE BROCHURE
Access information about symptoms, diagnosis, and management of Alexander disease in this brochure for healthcare providers.
Patient advocacy organizations
There are several patient advocacy organizations that offer education, resources, and support for people with Alexander disease and their families:
Alex, The Leukodystrophy Charity
Provides access to vital support and information for all those affected by a genetic leukodystrophy and is helping to advance medical research
Elise’s Corner
A community group focused on spreading awareness of Alexander disease and aiding research efforts to find treatments and a cure for this rare genetic disorder
End AxD
Focused on being a catalyst for research and development of a treatment—and eventual cure—of Alexander disease, and to help those with the disease get the care they need
Hunter’s Hope
Established to address the acute need for information and research with respect to leukodystrophies, and supports and encourages those afflicted and their families as they struggle to endure, adjust, and cope with the demands of these fatal illnesses
United Leukodystrophy Foundation
Dedicated to funding cutting-edge research and to providing leukodystrophy patients and their families with disease information and medical referrals
Leukodystrophy Centers of Excellence
Depending on their location, patients may be referred to a center that specializes in leukodystrophies and offers comprehensive care, such as a Center of Excellence, to establish a disease management plan.