2020 CDG Scientific and Family Conference! On behalf of the CDG Community and Sanford Burnham Prebys Medical Discovery Institute, the 2020 CDG Scientific and Family Conference was held February 28 – March 1st in San Diego, CA. Featuring 32 captivating presentations from a diverse panel of experts, 116 medical professionals and 52 families united to support and enhance CDG research, knowledge, therapeutic and alternative treatment strategies.

Over the course of the weekend, patients, families, advocates, researchers, clinicians and industry leaders joined together to raise awareness, promote education and share critical information about advancing the science behind CDG. We want to acknowledge and thank all of the event speakers, sponsors, medical professional attendees, volunteers and CDG families for making this event a huge success!

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.

The direct link to each program session can be accessed by clicking on each session title below:
Dr. Melissa Merideth – Reproductive Health Issues in Females with CDG
Dr. Canice Crerand – Navigating Adolescence with CDG: Behavioral & Transition Needs
Dr. Christina Lam – CDG Genetics and Introduction to Gene Therapy
Dr. Hudson Freeze – CDG Updates and Perspectives
Dr. Andrew Edmondson – Models for CDG Research
Dr. Eva Morava-Kozicz – CDG Studies, Treatments and Future Therapies
Lynne Wolfe – Updates from the NIH CDG Natural History Study
Dr. Martinez Duncker – Summary of CDG Cases & Physician/Research Network in Latin America
Carlota Pascoal – CDG & Allies – PPAIN: The CDG Immunology Project
Karyn Searcy – Beyond the Diagnostic Label
Becki Cohill & Leah Foreman – Caring for the Caregiver
Philip Lindsley – Special Needs Trusts & Estate Planning

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 this year’s conference “Best Moments” video clip and look forward to seeing you all in 2022!

Welcome to our Newsletter!

• 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 Awareness around the globe; each year CDG CARE partners with the Portuguese Association for CDG to launch a 2-month campaign leading up to May 16th to promote resources, support events, advance research and raise funds to support families that will help to improve the lives of children and adults diagnosed with CDG.

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 $150,000 in research projects, $15,000 in family travel scholarships and $10,000 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.