New foreword for meeting welcome pack
On-line HSP meeting in Canada
There is a new HSP meeting being run in Canada on Sat 8th and Sun 9th of May. The meeting is being held on-line, and you may find something of interest. Registration for the meeting is CAD20 (~£11.65), and the meeting runs from 09:00-16:00 EST (16:00 – 21:00 BST). Funds raised are being used for HSP/PLS research The meeting is …
New HSP Research Award
There is a new award for HSP researchers, being funded by EuroHSP, the Adolf Strümpell Prize with a value of 2,500 Euro. It is a best paper award to recognise research achievements in therapy/treatment for HSP.
Potato Pants Mini-fest On-line
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 …
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