There is a zoom meeting scheduled for those in Northern Ireland on 23rd April 2026 at 7pm. Join us for a general conversation about HSP. Please contact the organiser, Martin Rafferty, for more information.
SPG 11 and SPG 15 Families Zoom Meeting Report
14 January 2026
We have a separate meeting occasionally for these types of HSP because, although they are very similar to each other, they are very different, in some ways, from other types of Hereditary Spastic Paraplegia.
May monthly meeting with Estelle
May 2025
Eight people joined the May monthly meeting with Estelle. This session is one of our regular, informal, Zoom meetings held on the third Tuesday of each month.
Monthly zoom meeting for all with Estelle
This session is one of our regular, informal, Zoom meetings held on the third Tuesday of each month. The meeting is open to all those coping with HSP and you are very welcome to come. Zoom link here.
AGM presentations on YouTube
All our 2024 AGM presentations are now on our YouTube channel -why not pop over and watch?https://www.youtube.com/@ukhsp-spasticparaplegia #HSP #HereditarySpasticParaplegia #RareDisease Harini Jeyakumar presented her study into the Epidemiology of HSP in England and Northern Ireland, focussing on mental health outcomes. She completed for her dissertation in her Masters of Public Health degree. – https://www.youtube.com/watch?v=ARMtXWg0EOE Estelle Marshall presented her study of …
Presentation Details – 13th October
We are pleased to announce that we have three presentations arranged, as outlined at our AGM. These are all on Sunday 13th October, and will be via Zoom. These presentations will also be recorded and uploaded to our YouTube channel after. 11:00 – Harini Jeyakumar – Epidemiology of Hereditary Spastic Paraplegia in England and Northern Ireland using routine health records …
Annual General Meeting (AGM)
The group’s Annual General Meeting (AGM) will be on Saturday 24th August via Zoom
scientific Zoom on the SPG4 Project
Save the date! Dr Cinzia Rinaldo will be holding a scientific Zoom session for lay people interested in the SPG4 Project, which the HSP Group is supporting. It is 31 July at 6.30pm UK time (7.30 European Central Summer Time). More details to follow.