Palabras clave: defectos congénitos de la glicosilación

Finding cures for CDG starts with Awareness. Support 16th May as World CDG Awareness Day!

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 iA4_WCDGAD_02_worlds 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.

  1. Share and spread the press release available HERE
  2. Get more signatures for our request among the WHO HERE
  3. 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
  4. Print our handprints, take a photo and share it on our available photo gallery and social media (Facebook and Twitter).

Vanessa Ferreira

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.

4 posters

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

go green think CDG

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.

9. 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!

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May 16, 2016: Show you care, be aware! World Congenital Disorders of Glycosylation (CDG) Awareness Day

Presentation

CDG Awareness is like the sun. When it shines on things, they are transformed”. adapted from Thich Nhat Hanh.

The World Congenital Disorders of Glycosylation (CDG) patients voice is an united community dedicated to fight against the impact a rare disorder called Congenital Disorders of Glycosylation (CDG). If you have not heard of it, that is because is a Rare disease. The most common type of CDG , named PMM2-CDG, affects about one in 20,000 people. So far, only around 900 patients  have been accurately identified with PMM2-CDG, suggesting that many CDGs cases are under-or misdiagnosed than what is documented.

In the light of the lack of awareness and visibility for Congenital Disorders of Glycosylation (CDG), the world CDG community takes the step to reinforce our request among the World Health Organization (WHO) to get the declaration of an annual World  Congenital Disorders of Glycosylation (CDG) Awareness Day.

To achieve this, we will celebrate May 16 as World  Congenital Disorders of Glycosylation (CDG) Awareness Day! We are happy to share the top 9 Tips to spread the word worlwide for CDG!

Congenital Disorders of Glycosylation (CDG) urges all those who feel committed, especially patients and families, and directly those working in health, education, and social and legislative areas to express their support for the application for our annual World Congenital Disorders of Glycosylation (CDG) Awareness Day by organizing events, signing the public online petition, reading our manifesto and sharing information amongst your contacts.

Sign and share our Online Public Petition to support 16th May (day of birth of Pf Jaeken’s, the medical doctor that reported the first CDG patients more than 30 years ago) available HERE

 

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