Fortunately there are as well as on national basis as international  many associations, who are working together as HSP self-support groups. They all support in giving sufferers the feeling not to be alone. They try to help them in daily problems with their life and they announce to the researches as well to the Tom Wahlig Foundation: "We are here". 

Selbsthilfegruppe Deutschland

gehn-mit-hsp + hsp-hilfe.de

HSP - Foundation USA

HSP Research Foundation Australien

Associación Espanola de Paraparesia Espástica Familiar

Association Struempell-Lorrain Frankreich 

The English group

Nors forening for Arvelig- Sastik Paraparese/-Ataski

swiss hsp- group

HSP Europe
(union of the european HSP - self support groups)

eurordis

orphanet