- Alliance for Treatment in HSP and PLS
- TreatHSP.net
- SPATAX
- German HSP Registry
- Clinical Research in ALS and Related Disorders for Therapeutic Development Consortium
- CanHSP
- UK HSP Registry
- NeurOmics
- BRAIN-TEAM network
ERN-RND | European Reference Network on Rare Neurological Diseases
for rare or low prevalence complex diseases