Meet the Board
Our board members bring lived experience from across the spectrum of rare EDS subtypes, spanning multiple continents and walks of life.
Leadership
Abbey Phillipson
Founder & President
cEDS USA
Board Members
HK
Hayley Kirby
Fundraising Chair
cEDS USA
DF
Dana Fortini
Policy/Affairs Chair
cEDS USA
DR
Dom Radway-Fatuga
Clinical Outreach
cEDS UK
RV
Rachel Valenta
Clinical Outreach
cEDS Israel
BP
Beckett Price
Administrative Chair
vEDS USA
CK
Chelsey Blair Kendig
Accessibility & Inclusion Chair
dEDS USA
Heather Shevach
Social Media Chair
clEDS USA
CA
Caroline Adams
Social Media Chair
cEDS USA
MC
Matthew Clive
Information & Technology Specialist
kEDS USA
MM
Mpho Mateska
Information & Technology Specialist
cEDS South Africa
NW
Natalie White
Social Events Support
aEDS USA
CW
Claire Wilcox
Social Events Support
cEDS USA
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