Voting underway for AGM
AGM – 15th July
News: Our 2023 AGM will be on Saturday 15th July, at 10:30.This will be through Zoom to allow as many members to attend.#HSP #RareDisease #HereditarySpasticParaplegia
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Help us with a new year resolution?
If you’re thinking about new year resolutions, think about offering some time to help us deliver our mission statement.
HSP in Waterloo Road
Lucy Begg portrays people with disabilities in a positive way on BBC Waterloo Road
Happy New Year
Hoping everyone in the #HSP world has had time to relax and enjoy the holidays. Wishing everyone a happy new year! #HereditarySpasticParaplegia #RareDisease
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Young People with HSP – Call for help
A study at Sheffield University seeks to improve care for young people who are living with HSP.
Accessibility and Electric Cars
There is a useful guide on the AutoTrader website which gives advice for people with disabilities interested in getting an electric vehicle.
HSP Patient Journey
People may be interested to know that the European Reference Network have just published a ‘patient journey’ for people with HSP. Each row on the journey describes a different aspect of HSP. Headlines give details about HSP, and cover what may happen in clinic. The journey also gives some of the challenges faced by people with HSP, and some aspirational …
Childhood Onset HSP Survey
Two mothers of children with HSP, one from the UK the other from the US, have teamed up. They seek to gather data that might help researchers and clinicians working on treatments. They can also connect families with the same HSP types or variants, and aspire to create a global community of HSP parents. Their survey has been open for …