Childhood Onset Survey 2022 Report - Flipbook - Page 20
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 hsp.research@childrens.harvard.edu
Amy Tam hsp.research@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 and Support 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
Kids with SPG3a
Our Moon's Mission- SPG 56 - Australia
Saving Jordan Foundation - SPG49
Team Leni Foundation - SPG49
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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