World CDG Day

CDG Awareness Logo

 

"Awareness is like the sun. When it shines on things, they are transformed."
by Thich Nhat Hanh

 

What is World CDG Day?

World CDG Day, May 16th, is a global day which was launched in 2016 by the Portuguese Association for CDG (APCDG) together with CDG CARE and worldwide CDG patient groups, advocates, family members, friends and professionals.

World CDG Organization (WCDGO) encourages our friends all over the world to choose their own activities and events on World CDG Day to help raise awareness of what CDG is, what it means to live with CDG, and how people with CDG deserve equal opportunities among their peers.

History and Background

Why May 16?

May 16 is the birthday of Pf. Jaeken, the medical doctor who reported the first CDG patients in 1980.
In 1978, Pf. Jaak Jaeken  was asked to investigate why two lovely twin children showed a problem of psychomotor disability. The date for World CDG Day being the 16th day of May, was selected to signify the uniqueness of Pf. Jaeken’s motivation and determination to report in 1980 the first clinical description of PMM2-CDG (called CDG-Ia at that time) and to introduce in 1984 the transferrin isoelectrofocusing as a screening method.

In early 2016, a doodle poll was circulated among the CDG Community and this day, May 16th, was selected to represent World CDG Day.

The World CDG Organization created this dedicated webpage as a single meeting place where the global community can share their activities and participate inWorld CDG Day initiatives, including

Join us to create a single global voice to advocate for the rights, inclusion and well-being of all individuals diagnosed with CDG on May 16th!

The World Congenital Disorders of Glycosylation 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

AWARENESS for CDG is key, to accelerate therapeutic options! Please join us!

7 key reasons on why a World Congenital Disorders of Glycosylation (CDG) Day matters

  1. 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. This suggests that many more CDG cases are under-or misdiagnosed than what is documented.
  2. Many CDG patients and their family members wait a long time until their condition is diagnosed, partly because many clinicians do not recognize the conditions and do not interpret the symptoms correctly.
  3. The close family and friends of a CDG patient, who are wonderfully supportive, most likely are not able to name what our beloved CDG patients have, or describe how it functions in their body.
  4. The probability to find a health care provider who knows what CDG is is very low.
  5. Most forms of CDG do not have a treatment.  Thus, quality of life and survival of CDG patients rely on research and funding.
  6. Given the scarce research funding currently available for rare diseases, diseases with lack of awareness, such as CDG, represent a particular challenge for researchers working in this area.
  7. The research, the funding, and hopefully, the cures will come, but not if CDGs remain unknown among our society!

 

A World Congenital Disorders of Glycosylation (CDG) Day is urgently needed!

 

REMEMBER, the overall World Congenital Disorders of Glycosylation (CDG) Day campaigning materials may not be used for commercial or fundraising purposes.


Page modified at Thursday, April 30, 2020 - 20:42