CDG are a family of rare metabolic diseases with low visibility, without targeted therapeutic solutions and generally unknown among the medical and scientific communities.
Awareness is the first step to diagnosis. Diagnosis is the first step towards a cure.
It is under this motto that national CDG patient associations (APCDG, CDG CARE, AESCDG, CDG Italia, CDG Suisse, among others) in collaboration with the international CDG research network (CDG & Allies-PPAIN) promote the annual World CDG Awareness Day.
This is a worldwide movement aiming to alert society about the numerous challenges and unmet needs this community faces on a daily basis. CDG are disorders caused by defects in the mechanism that forms, processes and attaches sugars (glycans) to the proteins and lipids that are the building blocks of cells. Clinical signs and symptoms affecting these patients are very heterogeneous and, often, multisystemic. Even though there are over 130 known types of CDG, therapeutic advances have not accompanied the diagnostics improvements.
How can you join/support this campaign?
There are many activities, materials and events you can join, share and even host.
Here are some examples:
- Websites / Social media #1 http://www.apcdg.com/ #2 http://www.researchcdg.com/ #Twitter @CDG_Portugal #LinkedIN Portuguese Association CDG #Facebook Sindrome CDG #Facebook World Congenital Disorders of Glycosylation Awareness Day/ @worldcdgawarenessday
- Spread World CDG Awareness Day
- Go Green
- Frame your CDG Awareness
- Press Kit
- Volunteer
- Plan and post your event
How did the 2018 World CDG Awareness Day go?
Here are some numbers:
OUTCOMES (Global data)
- 3254 Followers
- 11797 interactions with posts
- 362 CDG Awareness Frames
- 29 worldwide events
- Launch of a new CDG awareness. Education. Diagnosis program dedicated to less frequent CDG types premiered by a PIGN-CDG infographic.
- 1 CDG Research fundraising campaign (CROWDCDG). Watch the campaign’s video HERE
Why May 16th?
It’s the birthday of Prof Jaak Jaeken, the medical doctor who discovered CDG. So, we wanted to celebrate CDG diagnosis and treatment and also Prof Jaeken’s achievements and the answers that thanks to him so many families worldwide have been given.
