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

18/4/2016

2 Comments

 
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.
Picture

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
Follow us on Facebook and on TWITTER
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  • About US
    • What we do
    • Who we help >
      • Research
  • Resources
    • Rare CDG
    • Publications
    • Guia Metabolica
    • CDG Facts
    • Task Force CDG Communication >
      • PMM2-CDG (CDG Ia)
      • PGM1-CDG (CDG It)
      • ALG6-CDG (CDG Ic)
  • EDUCATION
  • Awareness
    • Get involved World CDG Awareness Day 2019 >
      • Go Social World CDG Awareness Day 19
      • Spread World CDG Awareness Day 19
      • Plan An Event World CDG Awareness Day 19
      • Frame your CDG Awareness Campaign 19
      • Go green! Think CDG! ©Campaign 19
      • Volunteer World CDG Awareness Day 19
      • Press kit World CDG Awareness Day 19
    • Map of events for World CDG Awareness Day 2019
    • CrowdCDG
    • Awareness Day 2018
    • Awareness Day 2017
    • Awareness Day 2016
    • Rare Diseases
  • Community
    • Join Us - Membership
    • CDG Patient Groups
    • Empowerment
  • Events
    • 1st CDG Satellite Meeting
    • Speakers - World Conference on CDG 2019
    • Registrations - World Conference on CDG 2019
    • Poster submission - World Conference on CDG 2019
    • Follow up - World Conference on CDG 19
    • Volunteer Registration - World Conference on CDG 2019
    • Previous Edition World Conference on CDG 2017 >
      • Follow up - World Conference on CDG 17
      • Speakers - World Conference on CDG 17
  • DONATE
  • BLOG