MLD/X-ALD — where it's treated in the network
Most families come to the network case manager with a confirmed diagnosis of a specific leukodystrophy form and a home neurologist already managing spasticity, epilepsy and nutrition support. The case manager will help compare network clinics by the function-support program (PT/OT/ST, spasticity management, contracture prevention, AAC), the coordination format with the transplant team when racing toward HSCT/Libmeldy/Skysona, and family logistics, then schedule the course around the main medical follow-up.
Where it is treated in our network
2 clinics in our network offer different approaches to this diagnosis.
- Huizhou, China
Neurolife — Huizhou
Leukodystrophy management program across stages: PT/OT/ST to maximize development before progression, spasticity management with muscle relaxant dose coordination, scoliosis bracing when developing, family training for complex care (gastrostomy, BiPAP) in late stages. Coordination with transplant team when HSCT/Libmeldy/Skysona is used.
Visit clinic site - Shangrao, China
Hansi — Stem Cells
Experimental cell therapy for selected leukodystrophy candidates: autologous MSC, exosome nasal therapy as adjunct to standard symptomatic therapy or after gene/cell therapy. 5-stage protocol with consultation+screening. Only after coordination with the treating neurologist and transplant team.
Visit clinic site
What is Leukodystrophies?
Leukodystrophies are a group of inherited progressive diseases in which the myelin sheath of nerve fibers in the brain's white matter breaks down. ICD-10 codes metachromatic leukodystrophy as E75.2 and other forms in related rubrics; the group includes X-linked adrenoleukodystrophy and Krabbe disease. Each form has its own genetic basis; first signs are delay or regression of motor and cognitive skills.
Families usually reach the network case manager with the diagnosis already confirmed by genetics or biochemistry. For the presymptomatic late-infantile metachromatic form, Libmeldy cell therapy is available (EMA approval 2020). The rehabilitation side focuses on motor and cognitive function support, contracture prevention and family support. Details on causes, symptoms and the program are in the expandable blocks below.
Frequently asked questions about Leukodystrophies
What is Libmeldy and who is it for?
How can Stemcells help in leukodystrophies?
Can HSCT be done in China?
What to do at late stages when specific therapy does not help?
Other directions in this category
Other diagnoses in this category — pick the most relevant one.
Talk to a network coordinator
The coordinator reviews your documents and suggests matching clinics. We reply on Telegram and WhatsApp within an hour on workdays.