Survey on Childhood Onset HSP
Geplaatst: 19 mei 2022, 00:21
Hello!
My 3 year old daugther has early onset de novo complicated SPG3A. I have joined forces with another mum, Bridget, whose 18 year old son has de novo complicated SPG4.
We have organised a survey. Our main goals are to create an informal register, help parents connect and inform research where possible.
You can find further information on the survey and the questions at this link: https://forms.gle/hAowgsDGeSntQbgX9
I hope that parents of children with HSP or individuals who had HSP symptoms before the age of 18 themselves can complete it.
Thanks!
My 3 year old daugther has early onset de novo complicated SPG3A. I have joined forces with another mum, Bridget, whose 18 year old son has de novo complicated SPG4.
We have organised a survey. Our main goals are to create an informal register, help parents connect and inform research where possible.
You can find further information on the survey and the questions at this link: https://forms.gle/hAowgsDGeSntQbgX9
I hope that parents of children with HSP or individuals who had HSP symptoms before the age of 18 themselves can complete it.
Thanks!