Educational Materials

  • Caring for Your Child With CDG

    • A resource developed by the Mayo Clinic that explains how you can help your child diagnosed with CDG. It includes information about the members of your child’s health care team, how CDG may be treated, how to know when your child is having symptoms of CDG complications, and how you can help your child have a good quality of life.

  • Learn All You Can About Congenital Disorders of Glycosylation (CDG)

    • A resource developed by the Mayo Clinic that explains what CDG is. It includes information about the disorder, medical terms you might hear, causes, symptoms, and how the disorder could be diagnosed and treated.

  • A Message for Parents of Children With CDG

    • A resource developed by the Mayo Clinic that includes suggestions to help you as a parent to move forward and be involved in your child’s care after your child’s diagnosis with CDG.

  • FCDGC Updated Guidance for CDG Patients during COVID19 Pandemic

    • A resource developed by the FCDG Consortium clinical leaders to help you plan for life during the COVID-19 pandemic. It includes information about what the outlook is like for a CDG patient and the CDC’s recommendations for attending school/activities or going into the workplace.

  • Frontier in Congenital Disorders of Glycosylation Consortium

    • A video resource developed by the FCDG Consortium and Kindea Labs to explain what CDG is, what causes CDG, how patients with CDG are treated, and what the FCDGC aims to accomplish for the CDG community.

  • FCDGC, CDG CARE, NORD Resource for NGLY1 Community

    • An informational resource for the NGLY1 community through the combined efforts of members of FCDGC, CDG CARE, the National Organization for Rare Disorders (NORD), and Dr. Christina Lam at Seattle Children’s Hospital. Offers detailed information on the disorder including signs and symptoms, causes, diagnosis, and standard therapies are offered via the NORD website and an integrated video.

  • New Video Educational Resource on Biomarkers in CDG

COVID-19 Resources