Family Stories
If you would like to share your family story and journey to a diagnosis of CDG, please email us at info@cdgcare.com.
Partners and Patient Groups
Online and email communities offer an important means of connecting quickly with patients, families, and professionals to discuss and share information related to CDG. We are fortunate to have several trusted partners and resources available that will provide you with support from others experiencing the same challenges.
Join the CDG Global Alliance – a private Facebook group for parents, patients and immediate caregivers of individuals who have a confirmed diagnosis of CDG.
Like and Follow the CDG CARE Facebook Page – a public Page open to all families and community supporters to help keep current with the latest news, research and opportunities within the CDG Community.
Sanford Burnham Prebys Medical Discovery Institute
NIH – Office of Rare Diseases Research
National Organization for Rare Diseases (NORD)
EURORDIS – The Voice of Rare Disease Patients in Europe
“CDG Brazil” Contact Adriana Maciel
“CDG Australia” Contact Merell Liddle
“CDG Netherlands” Contact Bas Holten
“CDG Ecuador” Contact Ernesto
“CDG Greece” Contact Tanya Kuzmanova
“CDG Canada” Contact Mrs. Jody Goldhawk
“CDG Israel” Contact Martha Haimo
