The Potato Pants mini-fest on Easter Sunday was a great success, and has now raised (with gift aid) just over £1000 for the group.
Potato Pants On-line Mini-fest!
A few of the potato pants musical regulars will be performing a live on-line set for the HSP Support Group on Easter Sunday between 16:00 and 18:30. Amie Knight, Matt Griffiths, Mikey Ball and Matt Black are extremely talented Dorset musicians who have donated their time to us. The event will be free of charge to watch, but we would …
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Coronavirus Vaccine
HSP is a Neurological Condition. If you are in the UK, have HSP, and have not had your first Coronavirus vaccine, you can now book this yourself online or through 119. The UK has got to Group 6 – adults with underlying conditions which put them at higher risk of serious disease. The underlying condition list includes neurological conditions. 22 …
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Zoom meeting for All
March 14th 2021
I was delighted that 20 members joined me for the zoom meeting for all members on March 14th because when I’d originally planned the event, I hadn’t realised it was Mothering Sunday. We had members from all over the UK including four from Scotland.
Webinar: Improving care of rare disease patients in Europe
European Reference Network for Rare Neurological Diseases (ERN-RND) webinar on improving care of rare diseases patients. 23rd Feb.
New Q&A Video
New video on our Youtube channel with selected highlights of the Q&A session following Prof Andrew Crosby & Dr Emma Baple talk recorded on 25th July 2020
Vaccination scams
There has been a worrying rise in the amount of scams doing the rounds – especially in relation to the coronavirus vaccine. Not only are there many about, but they also look very genuine. This post by Mike Cain explores how to recognise the real thing. The vaccination is free via the NHS. Most appointments will be made via your …
Midlands Zoom meeting report
31st January 2021
We shared a lovely Zoom with 12 UK members, one completely new to the Support Group, some from different regions, and several of our regular members too.