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!