Sportspeople with HSP?


We are seeking sportspeople with HSP to help us in a bid to raise money.

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

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 …

London Marathon

Estelle is running the #LondonMarathon for us this weekend.


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 …