19th April 2021
We had a super Zoom chat at 3pm on Sunday 19th April 2021. No new members this time, but we enjoyed lots of discussion around a wide range of topics.
Milford Zoom meeting report
17th April 2021
We managed a Zoom meeting on the 17th April!!! Although booked in November 2020, the death of Prince Philip, determined our April meeting may not be possible, due to his funeral.
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.
Midlands – Zoom meeting
Midlands
Virtual meeting via Zoom, for those who would normally attend the Midlands HSP Support Group meetings.
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.
Coronavirus – Update on Meetings
Trustees decided at a recent meeting it was inappropriate to re-start face-to-face meetings until at least after the flu season.
Digital Meeting, 1st August
Dr Channa Hewamadduma: HSP – Insights from a large regional cohort of patients. Sat 1st August at 11:00 (BST). All are welcome to attend!
AGM on YouTube
The recording of our successful digital AGM is the perfect launch for our YouTube channel.