Childhood Onset Survey 2022 Report - Flipbook - Page 18
Where to Find/Who to contact….
Survey…
https://forms.gle/wBWXw8QfzJrAYvUY7
Survey Contacts
Ece Filiz efiliz@gmail.com
Bridget Lassig bridget.lassig@gmail.com
Boston Children’s Hospital Contacts
Dr. Darius Ebrahimi-Fahkari darius.ebrahimi-fakhari@childrens.harvard.edu
Catherine Jordan catherine.jordan@childrens.harvard.edu
Studies
Registry and Natural History Study of Early Onset Hereditary Spastic
Paraplegia (Natural History Study)
Hereditary Spastic Paraplegia Genomic Sequencing Initiative (HSPseq)
HSP Cure Foundations
Cure AP-4 (SPG 47, SPG 50, and SPG 51)- US
Cure SPG4 - US
Cure SPG50- Canada
Enorev (Gwenaelle Airdon- France)
HSP Research Foundation - Australia
Our Moon's Mission- SPG 56 - Australia
The Hereditary Spastic Paraplegia Support Group- UK
The Lily & Blair Foundation- De Novo HSP - US
The Maddi Foundation-England SPG 15
The HSP & PLS Foundation - US
The Tom Wahlig Foundation- Germany
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