Congenital Disorders of Glycosylation (CDG) is a group of rare and unknown diseases and although more patients are diagnosed with CDG and also new types of CDG are discovered, there is still an under- or misdiagnosis. There is also no medicine for CDG. It’s therefore important that CDG gets worldwide attention. Patients, family members, patient organisations and healthcare professionals are joining forces in order to hold an annual World Congenital Disorders of Glycosylation Awareness Day on 16 May.
The official poster is now available. The poster features Tereza (Czech Republic) and Phila (Finland), who are living with CDG.
This worldwide action aims at helping us reinforcing our request directed to the World Health Organization (WHO) to declare officially 16th May as the annual World Congenital Disorders of Glycosylation (CDG) Awareness Day!
How to get involved?
There are easy and simple ways to get involved in the 16th May 2016 World Congenital Disorders of Glycosylation (CDG) Awareness Day. Please visit our official Toolkit available HERE.
- Share and spread the press release available HERE
- Get more signatures for our request among the WHO HERE
- Go social during the World Congenital Disorders of Glycosylation (CDG) Awareness Day.
- Hashtag like crazy using the world hashtag for 2016: #WorldCDGDay2016
- Use our facebook and twitter cover and profile Photo, the Email signature and Share the suggested social media posts available HERE
- Print our handprints, take a photo and share it on our available photo gallery and social media (Facebook and Twitter).
5.Talk about CDG within local schools, medical and research institutions, in your workplace and so forth. Expose the 4 infographics (see them below) dedicated to CDG or give talks using the slide decks for this goal.
6. Go green! Think CDG!© is a CDG community campaign that encourages people to use green to show support for children and adults affected with Congenital Disorders of Glycosylation (CDG). All information HERE
7. If you volunteer for our actions, you can use the toolkit specially done for you.
8. Advocate for CDG among government leaders, or the news media using our resources available HERE.
16 May World Congenital Disorders of Glycosylation Awareness Day. Show you care, be aware!