We are delighted to share that through the support of the NIH funded FCDGC, the following patient educational booklets are now available to our community:
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!
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!
Join our efforts to raise $50,000 to advance CDG awareness, research and resources for families that will help to improve the lives of children and young adults diagnosed with CDG!
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.
The new and improved GoFundMe Charity platform is easy to use. Just use the following links to visit our CDG CARE Fundraising page and SHARE this opportunity with you family, friends and community supporters! You can even create your own team or event directly from the CDG CARE GoFundMe Charity Homepage by clicking HERE.
Join our efforts to raise CDG Awareness in your Community and Nationwide! We encourage everyone to share! Spreading the word helps us spread awareness for CDG!
In collaboration with APCDG and the newly-formed World CDG Organization, you can also join our 5th annual World CDG Awareness Day Campaign through social media and/or sharing your efforts by using the resources we have available below:
1) Follow us & Share Posts on Facebook, Instagram or Twitter
2) Join the 2020 “Stand United 4 CDG” Campaign and use our official CDG Frame for your personalized Facebook Profile image
3) Hashtag like crazy using the official 2020 hashtags: #StandUnited4CDG #WorldCDGDay #CDGGoGreen
4) Plan a neighborhood, community or virtual event to celebrate World CDG Awareness Day and let us know about it!
5) Join the 2020 CDG Chalk it Up! Project and have fun putting your creativity to work! Raise awareness, spread hope and joy, and make your neighbors and community smile through the power of sidewalk chalk
6) Participate by going GREEN through the Green Ribbon Project! Wrap a green bow around your mailbox, tree, or front door to show your support for CDG. Even more fun, get your neighbors involved and let them show off their #CDGGoGreen support too!
7) Follow the progress of our 2020 State Proclamation Campaign as we Paint the USA GREEN with the support of State Governors officially declaring May 16th CDG Awareness Day across the Nation!
8) Visit the updated World CDG Organization Awareness Day toolkit, posters, frame and materials: AVAILABLE HERE
There are no rules, there is no limit, just have fun and don’t forget to share your artistic creations by showing us your pictures and emailing firstname.lastname@example.org on or before May 16th! We thank you all for your continued support each year and we look forward to seeing the positivity and HOPE from our CDG Community radiate around the world this May 16th – World CDG Awareness Day!
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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 email@example.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.
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.
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.
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!
Video summarizing the Best Moments During the Second World Conference on CDG in Lyon, France
CDG Patient Advocacy groups and professionals are united to combat major challenges faced by CDG patients and family members. This video shows us that together we can make a positive difference in patients’ lives. This video was funded by the Crowdfunding Project “One CD=One Live CDG”, done in 2014 by families, friends and professionals.