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COVID-19 News & Updates
UPDATE Nov. 4, 2021 – The FCDGC Updated Guidance for CDG Patients and Families receiving the COVID-19 Vaccine is now available! Families and Community members can access the recommendation by Clicking HERE.
Jan. 9, 2021 – The FCDGC Guidance for Adult CDG Patients receiving the COVID-19 Vaccine can be accessed by Clicking HERE.
Sept. 12, 2020 – The FCDGC Updated Guidance for CDG Patients during COVID-19 Pandemic is available by Clicking HERE.
The STATEMENT ON COVID-19 was created in collaboration with CDG medical professionals, institutions and patient associations to give global recommendations for CDG families. The Statement is available in 11 languages and can be accessed by Clicking Here.
Frontiers in CDG Consortium
The Frontiers in Congenital Disorders of Glycosylation Consortium (FCDGC) is one of 20 federally funded rare disease Consortia with the aim to advance medical research by providing support for clinical studies and facilitating collaboration, study enrollment and data sharing. To learn more about this groundbreaking research advancement for the CDG Community, CLICK HERE to visit our Research Page! You can also visit the FCDGC website by CLICKING HERE.
We are also delighted to share that through the support of the NIH funded FCDGC, the following patient educational booklets are now available to our community:
*NEW – GPI Anchor Disorders: A Subtype of Congenital Disorders of Glycosylation (CDG)
Congenital Disorders of Glycosylation (CDG)
Caring for Your Child with CDG
A Message for Parents of Children with CDG
CDG Connect Patient Insights Network (PIN)
CDG CARE is proud to partner with the Invitae Patient Insights Network (PIN) and CDG Canada to offer the first international CDG Patient Registry – CDG Connect! CDG Connect serves as the centralized global network for CDG patients, researchers and drug developers to amplify the voice of CDG patients and optimize the search for better treatments.
CLICK HERE to enroll in CDG Connect TODAY! Share your experiences, access data and insights and advance research for CDG. Together, we can build the CDG Connect Community!
CDG Scientific & Family Conference
2022 Rare Disease Day Symposium and CDG/NGLY1 Family Conference! Registration is OPEN! Join us for the 2022 CDG/NGLY1 Scientific & Family Conference, February 25-27, 2022 in San Diego, California! To visit our event page and view the preliminary agenda, venue details and Buy Your Tickets – CLICK HERE TODAY!
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!
CDG CARE Newsletter
CDG Awareness Day
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 $200,000 in research projects, $25,000 in family travel scholarships and $15,000 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!
Best Moments from the 2018 CDG Family Conference
News Highlights and Events – Code
Join us, April 21, 2021 – The ABCs of Clinical Trials for the CDG and NGLY1 Community is not able to accept additional registrations at this time, but we will be streaming using YouTube Live at the Putting Rare Diseases Patients First! YouTube Channel located HERE.
We will start streaming on Wednesday, April 21st at 8:00am PDT / 11:00am EDT / 4:00pm GMT. We look forward to offering this very informative webinar to our Community!
Read and share our CDG CARE Newsletter!
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May 16th – Congenital Disorders of Glycosylation (CDG) Awareness Day!
What will YOU be doing on May 16th? JOIN the Campaign to Support World Congenital Disorders of Glycosylation (CDG) Awareness Day! Go green, spread the word, plan an event, share knowledge, hold a fundraiser, or volunteer with the Campaign!
May 16th is World Congenital Disorders of Glycosylation (CDG) Awareness Day! This day is designed to raise awareness and increase knowledge about CDG. Check out the State Map to see when your Governor officially proclaims May 16th as CDG Awareness Day in YOUR State!
If you are interested in planning an awareness event on or around May 16, 2017, please send an email with your event information to worldcdgawareness@gmail.com. To access and download the complete toolkit containing social media materials, event maps, handprints, educational and press kit resources, please visit World CDG Awareness Day Campaign!
SAVE THE DATE… February 28-March 1, 2020 for the upcoming CDG Scientific and Family Conference to be held in San Diego, CA! Stay tuned for a Tentative Agenda, Program Details and Registration opportunities to be released in July 2019! We are currently seeking support from our engaged Community partners to serve as Conference Sponsors! Please CLICK HERE to learn more about our 2020 Conference Sponsorship Opportunities a help promote the exchange of education, resources and therapeutic approaches for children and adults affected by CDG.
4th World Conference on CDG for Families and Professionals
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.
Best Moments from the 2016 CDG Family Conference
Research and Resources
COVID-19 News & Updates
The STATEMENT ON COVID-19 was created in collaboration with CDG medical professionals, institutions and patient associations to give global recommendations for CDG families. The Statement is available in 11 languages and can be accessed by Clicking Here.
CDG CARE expands services and research initiatives to support NGLY1 community! Visit the updated NGLY1 website by Clicking HERE.
Frontiers in CDG Consortium
The Frontiers in Congenital Disorders of Glycosylation Consortium (FCDGC) is one of 20 federally funded rare disease Consortia with the aim to advance medical research by providing support for clinical studies and facilitating collaboration, study enrollment and data sharing. To learn more about this groundbreaking research advancement for the CDG Community and current funding opportunities for eligible CDG researchers and CDG-related research projects, CLICK HERE to visit our Research Page!
CDG Connect Patient Insights Network (PIN)
CDG CARE is proud to partner with the Invitae Patient Insights Network (PIN) and Cerecor to offer the first international CDG Patient Registry – CDG Connect! CDG Connect serves as the centralized global network for CDG patients, researchers and drug developers to amplify the voice of CDG patients and optimize the search for better treatments.
CLICK HERE to enroll in CDG Connect TODAY! Share your experiences, access data and insights and advance research for CDG. Together, we can build the CDG Connect Community!