They make personalized wheelchairs with an abundance of options and are highly recommended by someone with HSP.

They assist San Diego County residents with barriers to mobility to achieve independence through coordination of transportation services.  To request a ride call:  888-924-3228

Medi-Cal health coverage, DME (durable medical equiptment) policies, statewide waiver information (HCBS).  California Medical eligibility call 916-552-9200

Pays for in-home attendants/eligible services so you can remain at home.  IHSS is administered by county.  Apply through SD County Health and Human Services office.

California Action Link for Rare Diseases is led by Assembly member Rick Chavez Zbur.  This state platform brings public and legislative awareness of rare diseases, educates legislators/staff about rare disease policy, ensures patients voice shaping policies.  It costs $25 to join. This brings recognition of issues rare disease patients face and it works to ensure access to physicians, treatments, and social services.   

What they do for California:  job training, workplace acomindations, assessment and assistive tech funding/placement services.  Phone: 1-800-952-5544. Ask for your local DOR field office.  San Marcos # 760-510-4705

California statewide housing resources and guidance, voucher/waitlist administration is done by local Public Housing Agencies.  HCD call 800-952-8356 ask how to contact your county/city PHA and disability priority or reasonable accomondation policies.  For local vouchers contact your county/city housing authority.

Peer-run help with independent living skills, equipment referrals, housing advocacy, attendant registries, benefits navigation.  Link in blue is the search by county in Ca.  Ask for benefits navigation help and applying for local programs.

National Organization for Rare Disorders is having a Breakthrough Summit.

Their latest event (10/2026) brought together thought leaders in industry, academia, patient advocacy, and government for the latest updates on rare disease diagnosis, drug development, research, patient engagement, public policy and market accessibility of orphan drug products.

Spastic Paraplegia - Centers for Excellence Research Network has 11 locations across the USA.  Currently, SP-CERN is asking for HSP volunteers to join in their research.  The research will be done in person once yearly for perhaps 3+ years.  When the research is complete, they expect these groups to be clinically ready for a trial.  Wouldn't it be great to be in a clinical study for a new drug for HSP?  If you want to learn how to join in a study, view their locations and contact information are here, however, none of the SP-CERN locations are in Calfiornia. 

Site for fundraising, resources, support, & research for HSP/PLS.  Their ambassadors provide support for patients in every state for local HSP communities.  Monthly Open Forum discussions are 1st Thursday of the month at 5PM Pacific. Register here: https://us02web.zoom.us/meeting/register/tZAodeigrTgoHtKQb4tpqCIPKjUAOHmHNgAg#/registration

This consortium is composed of researchers, physicians and patients aimed to provide a cure.  One thing Euro-HSP is working on is the Euro SPG4 Project.  For this, researchers in Rome are focused on a spastin recovery drug,  Neddylation, which is believed to be an inhibiting drug that can recover spastin to near normal levels. This could prevent the spastin from wearing down and perhaps sustain or improve the mobility effects for people with SPG4.   PMID: 38551087 

The ERN for Rare Neurological Diseases (RND) in Europe supports patients and families affected by rare neurological diseases which requires much specialized knowledge, treatment and resources with 24 European countries.  They have things for people newly diagnosed, and all others with HSP to help navigate next steps.

This Australian foundation is dedicated to finding a cure to HSP.