Useful links
The web can be a great place for finding more info on HSP.
Our YouTube channel has recordings of the presentations made after our AGMs. There is plenty of useful information which can start your searching. Scroll down to the bottom of this page to find links to other resources.
Presentations from our AGMs - some are from HSP research teams, others give practical thoughts on living with HSP:
|
AGM Presentations – Living with HSP |
Link |
Year |
|
Choosing Mobility Aids – Getting it right can be life changing. Ian Bennett |
2023 |
|
|
A compassionate mind approach for living with HSP. Hannah Gilbert. |
2023 |
|
|
Overview of UK Benefits relevant to those with HSP. Citizens Advice Bureau. |
2022 |
|
|
Falling With HSP, a physiotherapist perspective, Coralie Seary |
2021 |
|
|
Mindfulness, Acceptance and Values. Dr Ray Owen |
2021 |
|
AGM Presentations – Research and HSP Information |
Link |
Year |
|
HSP Study on Diagnosis and Treatment, Estelle Marshall |
2024 |
|
|
Epidemiology of HSP in England & NI, Mental health outcomes, Harini Jeyakumar |
2024 |
|
|
The molecular basis of HSP. Prof Andrew Crosy, Dr Emma Baple. |
2022 |
|
|
HSP Genes in the UK and building a registry, Prof Henry Houlden |
2021 |
|
|
HSP - A Eureka Moment, Lipid processing, Prof Andrew Crosy, Dr Emma Baple. |
2020 |
|
|
Insights from large UK HSP cohort. Biomarkers, gait, Dr Channa Hewamadduma |
2020 |
|
|
Rehabilitation and Physical Activity in HSP, Dr Gita Ramdharry |
2020 |
There are also a few other videos on our page:
|
Other Videos |
Link |
|
1000 Mile Challenge Launch from 2021 |
|
|
Potato Pants Festival video from 2022 |
|
|
Student Voice Project 2024 - Dalila Marra - From Uncertainty to Advocacy |
|
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Student Voice Project 2023 - Ela Curic - Diagnostic Odyssey |
We have also collated the best links we can find.
Click on a category below to find out more...
Support groups
Find similar groups supporting those with HSP from around the world
Support group links
Professional & local organisations
Organisations which provide services or may help with HSP in some way
Links to organisations
Hereditary Spastic Paraplegia
A range of information sources about the condition from across the web
Links about HSP