Welcome to our Newsletter!
May 16th – Congenital Disorders of Glycosylation (CDG) Awareness Day!
May 16, 2016 was the first recognized Congenital Disorders of Glycosylation (CDG) Awareness Day throughout the United States! Global efforts to raise CDG Awareness were made and a petition has been submitted to the World Health Organization to request that May 16th be recognized as the annual World Congenital Disorders of Glycosylation (CDG) Awareness Day!
What were YOU doing on May 16th? Experiencing the success of our 2nd Campaign to Support World Congenital Disorders of Glycosylation (CDG) Awareness Day! With so much awareness spread worldwide, we received 340 CDGAwareness smiles to our Campaign Gallery, 2,426 Likes on our CDGAwareness Day posts, 537 Shares, 70 Comments, and we reached 69,178 people worldwide! We painted the World GREEN, spread CDGAwareness, held 30 Events, and THANK EVERYONE for their support and commitment to our 2017 World CDG Awareness Day 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 our USA State Map to see which States officially proclaimed May 16, 2017 as CDG Awareness Day!
If you are interested in planning an awareness event on or around May 16, 2018, 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!
The 3rd World Conference on CDG for families and professionals: United shaping the future for CDG, will be held the 15th and 16th of July, 2017 in Leuven, Belgium. For additional information, please visit apcdg.com.
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.