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Hitchin get together meeting report

Group Meeting

28th January 2023

Twelve of us got together at the Orange Tree pub in Hitchin, Hertfordshire. It was good to see familiar faces as well as members that have returned after a few years. Great to catch up & spend  time with HSP’rs, face to face, after a long wait.

Sportspeople with HSP?

News

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

HSP in Waterloo Road

News

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

News

There is a useful guide on the AutoTrader website which gives advice for people with disabilities interested in getting an electric vehicle.

Birmingham Pre-Christmas Lunch

Christmas

26 November 2022
It was great to have 16 people meet up at the Packhorse Pub on Saturday 26th November for a pre-Christmas Lunch and was really lovely to welcome four new members plus partners/friends.

HSP Patient Journey

News

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 …

Milford’s November Sunday Afternoon Tea

20 November 2022
With this being the first Sunday Milford meeting since lockdown, there was a lot of catching up to do. Our speaker was Paul Graham, from the Queen Elizabeth Foundation for Disabled People (QEF) Mobility Services.