2026 CDG Scientific & Family Conference:
The 2026 CDG Scientific & Family Conference was held April 24–26, 2026 in Orlando, Florida, bringing together the largest global CDG gathering to date. Hosted by CDG CARE, the conference welcomed 330+ attendees from 11 countries, including clinicians, researchers, industry leaders, patients, parents, caregivers, siblings, and advocates united in advancing progress for Congenital Disorders of Glycosylation (CDG).
Over three inspiring days, attendees participated in scientific presentations, family-centered education, networking, patient-professional roundtables, and 26 scientific posters, all focused on accelerating research, improving care, and strengthening our global CDG community. The 2026 Conference also marked several exciting milestones, including the launch of the Global CDG Clinical & Research Network (CDG-CRN), the Patient Prioritized Research Agenda (PPRA), and the CDG Biorepository in partnership with COMBINEDBrain.
We are deeply grateful to our incredible speakers, volunteers, medical professionals, families, industry partners, and sponsors whose support made this unforgettable event possible and helped move CDG education, awareness, and research to new heights.
Stay tuned! As our 2026 “Best Moments” Conference Video is coming soon. In the meantime, we are excited to share the launch of the 2026 Conference Education & Research Miniseries, now available on the CDG CARE YouTube Channel.
2024 CDG Scientific & Family Conference:
On behalf of the CDG CARE Community and the Sanford Children’s Health Research Center, the 2024 CDG Scientific & Family Conference was held March 1-3, 2024 in San Diego, California. We were honored to feature 37 captivating presentations from a diverse panel of experts. In attendance we hosted 115 medical professionals and 200 parents/caregivers and patients/siblings from around the globe. We thank our speakers, volunteers, medical professionals, families, and sponsors for making this year’s event a huge success as we advanced CDG education, awareness and research to the next level!
We are delighted to share with everyone our 2024 “Best Moments” video created from photos that were taken at the recent gathering in San Diego below:
CDG CARE Engages FDA in Patient Listening Session: April 25, 2023
On January 30, 2023, CDG CARE engaged the U.S. Food and Drug Administration (FDA) in a Patient-Led Listening Session to share the burden of CDG and the needs of our community. During the session, representatives from CDG CARE and the broader community shared their personal experiences of living with CDG, their diagnostic challenges, and the physical and emotional toll that CDG has on their families. Through this opportunity, parent and professional advocates joined together to educate the FDA on CDGs and we expressed our commitment to bring the patients’ perspective to every stage of therapeutic development and approval. To read the full FDA Session Summary: Download the PDF HERE.
2022 Rare Disease Day Symposium and CDG/NGLY1 Family Conference: The 2022 CDG & NGLY1 Scientific and Family Conference was held February 25-27, 2022 in San Diego, California. The conference sessions were recorded and the 2022 Conference Education Miniseries is available on the CDG CARE YouTube Channel.
Highlights from our 2022 event may be viewed in the heartwarming video clip below:
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 available on the CDG CARE YouTube Channel.
We hope everyone enjoys viewing the 2020 “Best Moments” video clip below:
