Palabras clave: rare diseases

Proudly supporting 16th May is the World Congenital Disorders of Glycosylation (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.

In the light of the lack of awareness and visibility for Congenital Disorders of Glycosylation (CDG), the world CDG community takes the step to formally request from the World Health Organization (WHO) the declaration of an anual World  Congenital Disorders of Glycosylation (CDG) Awareness Day.  The World Congenital Disorders of Glycosylation (CDG) Awareness Day campaign aims to:

  • Be the platform to promote CDG awareness, visibility and advocacy efforts
  • Promote and synergize CDG research
  • Be the global driver to boost coordinated and concerted actions to confront CDG as a critical global health issue

To make 16th May an annual official day, 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. 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.

And you…. How are you planning to join us for the World Congenital Disorders of Glycosylation Awareness Day on 16 May?

Check our tips now!

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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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Enfermedades raras, genética y genómica en Scoop.it

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