21st February 2025
The Medway Neurological Network organised a get together for Rare Disease Day, Friday 28th February, a week early on Friday 21st February.
Medway Neurological Network – Rare Disease Day
Birmingham meeting report
1 February 2025
After a very cold, stormy, wet January, it was so nice for the Birmingham Group to meet up for a pub lunch at The Red Lion at Earlswood.
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 …
Feering, Colchester Meeting Report
20th October 2024
We met, as usual, at Feering Community Centre on a Sunday afternoon. As we arrived, Superman and a Disney Princess also arrived to surprise the guests at a four year old’s birthday party in the larger hall! Sadly, they didn’t join us!
Reminder of YouTube
This page is a quick reminder of the different videos that we have on our YouTube channel. This post is written on 14th October. We had 3 presentations yesterday, but those have not yet been edited and uploaded. Please check our YouTube channel for the latest updates. Access the channel directly: https://www.youtube.com/@ukhsp-spasticparaplegia The original reason for the channel was to …
Birmingham meeting report
12th October 2024
The Birmingham group had a lovely gathering on Saturday 12th October. 23 people came along, 15 of whom were people with the condition, 2 of whom were newcomers and one recently diagnosed.
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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 …
Milford Meeting Report
6th October 2024
We are always very pleased to welcome all those who make the journey to Milford, and a special thank you to those that offer to car share.
