Effective treatment available
Living with HSP – Management & Treatment News
Genetics company promotes rare disease registries
Connecting with research, clinical trials management
“You’ve got HSP …”
“There is nothing that can be done”
Mobile phone app for wheelchair users
Help with travel planning and getting around
Bike Skills Program for HSP kids
Monash Children’s Hospital, Victoria
Being cold makes walking with HSP difficult
But does warming the legs help?
Improving balance … what works better?
Real-world tasks or Virtual Reality games?
Bone density lower in HSPers
Testing and treatment recommended
SPG7 HSP more common in Australia
Genetic testing providing insight
Are you planned for an emergency?
Be your own ‘first responder’
