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Community

CDG PATIENT ORGANIZATIONS

CDG CARE Family Support Network (Support Group)
CDG Global Alliance (Support Group)
Amour Fund (USA)
CDG Canada
CDG CARE (USA)
CDG Italia
CDG Mexico
CDG Sweden
CDG Swiss
CDG UK
Cure SRD5A3
Foundation of Glycosylation (Canada)
Glycokids (Germany)
Grace Science Foundation (NGLY1-CDDG)
Les p’tits CDG (France)
Moonshots for Unicorns (PGAP3-CDG)
PIGA-CDG
PIGA CDG Brasil Association
Portuguese Association for CDG (APCDG)
Spanish Association for CDG (AESCDG)
World CDG Organization
The Association of Adults, Children and Metabolic Diseases (VKS) (Netherlands)

CDG PATIENT REPRESENTATIVES AND GROUPS

CDG patient representatives and groups in countries where there is no formal patient advocacy group.

CDG Australia Group – Contact Amy Dann
Brasil Contact –  Adamastor Kammler
Bulgaria Contact – Sindrome CDG
CDG Czech Republic  – Contact Michaela Špeciánová
Ecuador Contact – Ernesto Morother
Estonia Contact – Etienne Barrier
CDG Georgia Group – Contact Tata Tsintsadze 
Greece Contact –  Tanya Kuzmanova
Israel Contact – Martha Haimo
Ireland Contact – Barbara Vulso
Netherlands Contact – Bas Holten
Norway Contact –  Ingrid Fevang
Poland Contact – Dorota Cimięga
CDG South Africa Group – Contact Chantelle Van Schalkwyk
United Arab Emirates Contact – Rana Atwsi
VKS, CDG Group Netherlands Contact – Fiona Waddell

CDG SCIENTIFIC ORGANIZATIONS

Frontiers in Congenital Disorders of Glycosylation (FCDGC)
European Reference Network for Hereditary Metabolic Disorders (MetabERN)
CDG & Allies – PPAIN
FOR 2509
ProDGNE

CDG THERAPEUTICS ORGANIZATIONS

Applied Therapeutics
Avalo Therapeutics
Glycomine Inc.
Grace Science LLC
Maggie’s Pearl
Perlara PBC
Ultragenyx
Travere Therapeutics