Resources for Patients and Families

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Caring-for-Your-Child-With-CDG

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.

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Congenital-Disorders-of-Glycosylation-CDG

Learn All You Can About Congenital Disorders of Glycosylation (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.

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A-Message-for-Parents-of-Children-With-CDG

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.

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Frontier in Congenital Disorders of Glycosylation Consortium

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

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rarediseases.org-rare-diseases-ngly1-deficiency

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.

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Understanding Biomarkers and CDG

An overview of biomarkers, indicators of health or disease that play a key role in the diagnosis and treatment of CDG. Presented by CDG Care, a nonprofit <patient advocacy group>.

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What is PMM2-CDG?

YourekaScience provides an overview of PMM2-CDG, including symptons, treatment, and the future of CDG research.

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What is PIGA-CDG?

YourekaScience provides an overview of PIGA-CDG
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COVID-19 and CDG

View our webinar with updated information on COVID-19 infection and vaccination in CDG hosted by Andrew Edmondson, MD, PhD, clinical director of the CDG Clinic at the Childen's Hospital of Philadelphia and a principal investigator for FCDGC.

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CDG-COVID-Vaccine-Recommendation

CDG COVID-19 Vaccine Recommendations

A message from CDG CARE and the FCDGC team with guidance for CDG adults with regards to COVID-19 vaccines.

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FCDGC-Updated-Guidanc-for-CDG-Patients-during-COVID19-Pandemic

FCDGC Updated Guidance for CDG Patients during COVID19 Pandemic

A resource developed by the FCDGC 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.

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