Press release about the World Congenital Disorders of Glycosylation (CDG) Awareness Day. Show you care, be aware!

18/4/2016

By Fiona Waddell

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.

To make this day official, the World Health Organisation (WHO) must first give its approval. It's not so easy to make that happen and that's why we are asking you for help. If you organise an event on 16 May in the framework of the World Congenital Disorders of Glycosylation Awareness Day, let us know. It is simple and fast to post your event HERE. The more activities we can indicate to the WHO, the more chance we have that 16 May is officially named as the World Congenital Disorders of Glycosylation Awareness Day.

The official poster is also available. The poster features Tereza (Czech Republic) and Phila (Finland), who are living with CDG. It doesn't matter whether you are organising a big event or holding a small action. You can download a toolkit, which is available at http://www.apcdg.com/get-involved-world-cdg-awareness-day.html.

Get involved

People all around the world are encouraged to go social during the World Congenital Disorders of Glycosylation (CDG) Awareness Day. There are many other ways you can get involved in the World Congenital Disorders of Glycosylation (CDG) Awareness Day 2016:

Talk about CDG within local schools, medical and research institutions, in your workplace and so forth. Expose the 4 infographics dedicated to CDG or give talks using the slide decks for this goal
Print our handprints, take a photo and share it on our photo gallery and social media (Facebook and Twitter)
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).
If you volunteer for our actions, you can use the toolkit specially done for you.
Advocate for CDG among government leaders, or the news media using our resources available HERE
Help us covering the World CDG Awareness Day map, send the details to us by filling the form below and we will post it on our website HERE.

16 May World Congenital Disorders of Glycosylation Awareness Day. Show you care, be aware!

Media and Communication Contact:Fiona Waddell
Contact: worldcdgawareness@gmail.com
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2 Comments

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Press release about the World Congenital Disorders of Glycosylation (CDG) Awareness Day. Show you care, be aware!

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