Synonyms: ALSP | Adult-onset leukoencephalopathy with axonal spheroids and pigmented glia | Autosomal dominant leukoencephalopathy with neuroaxonal spheroids | FPSG | Familial dementia, Neumann type | Familial progressive subcortical gliosis | GPSC | HDLS | Hereditary diffuse leukoencephalopathy with spheroids | POLD | Pigmentary orthochromatic leukodystrophy | Subcortical gliosis of Neumann
Hereditary diffuse leukoencephalopathy with axonal spheroids and pigmented glia is a rare autosomal dominant disease characterized by a complex phenotype including progressive dementia apraxia apathy impaired balance parkinsonism spasticity and epilepsy.
Data from Orphanet are used to provide information on a disease's name, synonym(s), and overview. Reference: Access aggregated data from Orphanet at Orphadata. Orphadata: Free access data from Orphanet. © INSERM 1999. Available on http://www.orphadata.org. Data version February 2026
Newly diagnosed with
Adult-onset leukoencephalopathy with axonal spheroids and pigmented glia?
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Advocacy Organizations
Alex, The Leukodystrophy Charity
Support and access to treatment for everyone living with leukodystrophy Provide support for those living with leukodystrophy, and their families/carers Raise awareness of leukodystrophy Improve best practice in prevention, diagnosis & treatment Support research initiatives
Childhood Dementia Initiative
Our vision is for sustainable global health solutions for childhood dementia. This will be achieved through the following outcomes: - Treatments and cures available for children with dementia - Access to equitable and quality care for children with dementia and their families - Childhood dementia is a global health policy priority.
Cure LBSL
Our Mission Find a cure for LBSL, advance awareness of the disease, and support patients, families, and medical providers confronted with this ultra-rare condition.
Genetic Support Network of Victoria
The Genetic Support Network of Victoria is an organisation that supports people living with genetic, undiagnosed and rare conditions and those who support them including community and families, patient support organisations, health professionals and industry. Our vision is our community flourishing and living their best lives.
KIF1A.ORG
KIF1A.ORG is a global community dedicated to improving the lives of those affected by KIF1A Associated Neurological Disorder (KAND) and accelerating research to find a cure.
SISTERS’ HOPE FOUNDATION
The mission of Sisters’ Hope Foundation is to support and empower families impacted by HDLS/ALSP by: 1. educating the public to increase awareness around this rare disease 2. advocating for further research and funding to improve treatment options 3. connecting patients and families with this diagnosis to build community and support
United Leukodystrophy Foundation
OUR MISSION is to provide support to the leukodystrophy community and enable platforms to accelerate improving patient quality of life and finding cures.
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Clinical Trials
For a list of clinical trials in this disease area, please click here.