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! 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!