REGISTRATION IS NOW OPEN! Join us, February 28-March 1, 2020 for the upcoming CDG Scientific and Family Conference to be held in San Diego, CA! This 3-day event will host educational sessions focusing on the science behind CDG, provide valuable resources for families and patients, and present interventional and therapeutic approaches for the management of CDG. To view the preliminary agenda, venue details and to Register NOW, CLICK HERE!
We are also continually 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 2018 CDG Scientific & Family Conference was held February 23-25, 2018 in San Diego, California! Featuring 32 captivating presentations from a diverse panel of experts, 90 medical professionals and 53 families united to support and enhance CDG research, knowledge, therapeutic and alternative treatment strategies. The conference sessions were recorded and the post-conference video program can be viewed on the CDG CARE YouTube Channel.
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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 firstname.lastname@example.org. 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.
May 16th – World Congenital Disorders of Glycosylation (CDG) Awareness Day!
May 16, 2016 was the first recognized World Congenital Disorders of Glycosylation (CDG) Awareness Day! And in an effort to continue to raise CDG Awareness around the globe; each year CDG CARE launches 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.
On May 16, 2019 the CDG Community came together and officially held the biggest and best global CDG Awareness Campaign effort to date! With an intense and effective social media and email dissemination program, we promoted a new CDG “Just the Facts” Series, a CDG Heroes Spotlight, and targeted Campaign and GoGreen! images which were viewed over 57,000 times! The CDG Community came together and shared social media posts 713 times, resulting in an overall impact of 8,753 positive reactions and comments over the course of just 6 weeks!
Through this year’s CDG Awareness Day annual fundraising campaign, CDG CARE supporters raised over $26,000 to advance our mission! CDG CARE also recruited volunteers throughout the United States to serve as State Advocate Representatives and request from their respective State Governors that May 16, 2019 officially be Proclaimed as CDG Awareness Day throughout their State! We can stand proud this year knowing that 16 States across the country supported our efforts and the USA was Painted GREEN in support of CDG Awareness Day as represented below! If you are interested in volunteering in future years to help support efforts in your State, please send us an email at email@example.com TODAY!
We thank all of our CDG families, friends, medical professionals and community supporters for helping us to make May 16, 2019 World CDG Awareness Day our most impactful CDG Awareness Campaign to date! Together we are strong and we will continue to stand united in our cause to bring HOPE to all those affected by CDG!
The 3rd World Conference on CDG for families and professionals: United shaping the future for CDG, was held the 15th and 16th of July, 2017 in Leuven, Belgium. For additional information, please visit apcdg.com.
Frontiers in CDG Consortium
The Frontiers in Congenital Disorders of Glycosylation (CDG) Consortium 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.
DONATE NOW – With your gift, we can further our mission to promote CDG awareness, provide education and support to families affected by CDG, and advocate for scientific research to advance the diagnosis and treatment of CDG.
Checks may be made payable to CDG CARE and mailed to:
P.O. Box 38832
Colorado Springs, CO 80937-8832
USA CDG Tea Launch – This highly anticipated Swedish tea is a special blend created by CDG parent, Anna Lund, and developed to promote global CDG awareness and research. CDG CARE is honored to supply the delicious loose leaf tea to those interested for purchase within the USA. Please send order inquiries to firstname.lastname@example.org.
Help Raise CDG Awareness through the CDG Community Store
(teddy bear, shirts, and more)