Lightning Talk

Our chair is taking part in the lightning talk round 3 at #RareShowcase2020 on Thursday 19th November. Hear him talking about using technology to identify the needs of those with #HereditarySpasticParaplegia. More details here:

Milford Zoom meeting report

8th November 2020

On November 8th, not wanting to miss out on a celebration, fourteen of us raised a glass, cup or mug in honour of twenty years of the Milford meetings. When face to face meetings return, hopefully in 2021, we’ll celebrate together.

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.

New Video!

There is a new video on our YouTube channel – Dr Gita Ramdharry talks about physical activity and rehabilitation in HSP

Next Presentation

On Tuesday 11th Aug at 13:30 Gita Ramdharry will talk about rehabilitation and physical activity in HSP

New YouTube Video

The video of Dr Channa Hewamadduma’s presentation is now on our YouTube channel

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!