2022 Rare Disease Day Symposium and CDG/NGLY1 Family Conference! On behalf of the CDG Community and Sanford Burnham Prebys, the 2022 CDG/NGLY1 Scientific and Family Conference was held February 25-27, 2022 in San Diego, California. Featuring 35 captivating presentations from a diverse panel of experts, 102 medical professionals and 34 families united to support and enhance CDG & NGLY1 research, knowledge, therapeutic and alternative treatment strategies. The conference sessions were recorded and the 2022 CDG & NGLY1 Education Miniseries is now featuring episodes on the CDG CARE YouTube Channel.

2020 CDG Scientific and Family Conference! The 2020 CDG Scientific and Family Conference was held February 28 – March 1, 2020 in San Diego, CA.

CDG CARE is delighted to share that through an independent educational grant from Cerecor, Inc. and prepared by the amazing production team at MedEd on the Go, all of the 2020 CDG Family Conference sessions were recorded and the post-conference video program is NOW available on the CDG CARE YouTube Channel.

We hope that these videos are a helpful resource to our families as we move into a world of telehealth and online educational opportunities. CDG CARE is here to help our CDG Community navigate through the management of common CDG issues and questions, and will continue to collaborate to provide resources, education and research opportunities to advance the health and well-being of all families affected by CDG.

As always, we hope everyone enjoys viewing and sharing the 2020 “Best Moments” video clip below!

Welcome to our Newsletter!

• Volume 19
• Volume 18
• COVID19 News & Updates: Click HERE
• Volume 17
• Volume 16
• Volume 15
• Volume 14
• Volume 13
• Volume 12
• Volume 11
• FCDGC Holiday Newsletter
• Volume 10
• Volume 9
• Volume 8
• Volume 7 (pdf)
• Volume 6 (pdf)
• Volume 5 (pdf)
• Volume 4 (pdf)
• Volume 3 (pdf)
• Volume 2 (pdf)
• Volume 1 (pdf)

May 16th is World Congenital Disorders of Glycosylation (CDG) Awareness Day!

The first World CDG Awareness Day was officially recognized on May 16, 2016.

And in an effort to continue to raise CDG & NGLY1 Awareness around the globe; each year CDG CARE launches a 2-month campaign leading up to May 16th to promote resources, advocate for awareness, support events, advance research and raise funds to support families that will help to improve the lives of children and adults diagnosed with CDG & NGLY1.

This is a day that we come together globally and send the message of CDG Awareness and the bond we all share, that despite these uncertain times, we will never lose HOPE!

We are proud to share that through our CDG Community fundraising efforts we have currently funded >$500,000 in research projects, >$30,000 in family travel scholarships and >$20,000 to our fellow CDG Patient Associations to collaborate and support their initiatives.

We hope that this next May 16th, you will join our efforts to raise CDG Awareness in your Community and Nationwide!  We encourage everyone to participate because spreading the word helps us spread awareness for CDG!

The 4th World Conference on CDG for families and professionals: The CDG Road from Diagnosis to Therapies! was held the 26th and 27th of July, 2019 in Lisbon, Portugal. For additional information, please visit apcdg.com.