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Resources

The global CDG community has developed a number of educational resources and support groups for CDG patients and families to help them learn about CDG and connect with other CDG families.

Family Support

CDG CARE Family Support Network (FSN)

The global CDG CARE Family Support Network (FSN) connects patients, families, and caregivers together and promotes the support of resources and inspiration to those living with CDG. Whether you or your child have been recently diagnosed with CDG, or have been living with a CDG diagnosis for some time, this network is for you!

A Message for Parents of Children with CDG

Created by the Mayo Clinic, this resource offers words of advice and comfort to you and your family, and ways in which you can take care of yourself and your family.

Caring for Your Child with CDG

Created by the Mayo Clinic, this resource has information about ways in which you can prepare to help your child after they have been diagnosed with CDG.

Patient Experience Insights from the CDG Connect PIN Patient Registry

A poster summary created by CDG CARE on insights gathered from the global CDG patient registry.

RareConnect

RareConnect hosts many online communities for individuals affected by rare diseases. The support group for CDG is growing and already has 350 members— it is a place where you can meet with other families going through a similar situation.

CDG Education

Congenital Disorders of Glycosylation Patient Education Booklet

Created by the Mayo Clinic, this patient education booklet has easy-to-understand information about CDG.

GPI Anchor Disorders Patient Education Booklet

Created by the Mayo Clinic, this patient education booklet has easy-to-understand information about the GPI Anchor Disorders CDG subtype.

Congenital Disorders of Glycosylation - FCDGC

A video created by the Frontiers in CDG Consortium (FCDGC) to teach you all about CDG, treatment options, and their goals as an organization.

Congenital Disorders of Glycosylation - CHOP

The CDG clinic at the Children’s Hospital of Philadelphia (CHOP) conducts diagnostic testing for children suspected to have CDG, and this resource provides a brief overview of their clinic.

Congenital Disorders of Glycosylation - NORD

Developed by the National Organization for Rare Disorders (NORD), this resource is an overview of all things CDG.

Congenital Disorders of Glycosylation Brochure -SJD Hospital

A brochure created by Sant Joan de Deu (SJD) Barcelona Children’s hospital consists of some useful basic information about CDG, its causes, diagnosis, and treatment. Available in English, Spanish, Catalan, Portuguese and Italian.

The Practical Guide to CDG Families

A comprehensive resource created just for you by the Portuguese Association for CDG. It has more information about the biology behind CDG, as well as details on symptoms and management on CDG. Available in English, Spanish and Dutch.

Glycoland and the Colored Antennas

The story of "Glycoland and the Colored Antennas" explains how rare diseases occur, in an entertaining and simple way for children and adults. Available in 11 languages.

CDG Facts Infographics

An educational resource covering basic facts about CDG in an easy-to-read format. This resource was created by the Portuguese Association for CDG.

CDG Type Infographics

A collection of educational infographics for a variety CDG types that has been developed by World CDG Organization.

2020 SBP Rare Disease Day Symposium & CDG Conference Lectures

Educational lectures covering a variety of important topics on CDG.

Biomarkers in CDG by FCDGC

Educational video on biomarkers in CDG developed by the Frontiers CDG Consortium.

Therapies & Clinical Studies

CDG Therapies in Development

World CDG Organization has compiled a list of therapies currently in development for CDG, including dietary and non-dietary approaches.

CDG Clinical Trials and Studies Resources

World CDG Organization has developed an up-to-date list of clinical trials and studies on CDG as well as a number of educational materials on clinical trials:

ABCs of Clinical Trials for the CDG/NGLY1 Community Webinar

An educational webinar led by CDG experts where you will learn about the regulatory process to approving treatments and how clinical trials and natural history study are designed. Hosted by CDG CARE.

COVID-19

COVID-19 and CDG Webinar by FCDGC

A webinar developed by the Frontiers in CDG Consortium on COVID-19 infection and vaccination in CDG.

FCDGC COVID-19 Vaccine Recommendation for CDG Patients and Families

The Frontiers in CDG Consortium official 2021 COVID-19 vaccine recommendation and safety measures for CDG patients and families.