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 …
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Group Social – 8th October
We are pleased to announce our first group social meeting, on Saturday 8th October 2022 in Birmingham. Members should find further details of the day in their e-mails. We need members to confirm attendance by 26th Sept so that we can ensure appropriate catering. The main objective of the day is for socialising with other members. However, there are also …
The molecular basis of HSP
New video on our YouTube channel – Andrew Crosby and Emma Baple tell the group about the work their team has been doing in Exeter, including new types of HSP, partly funded by the group. This video was recorded on Weds 24th August 2022. https://www.youtube.com/watch?v=Mfk6qap2ric #HSP #RareDisease #HereditarySpasticParaplegia
