16th May,  World Congenital Disorders of Glycosylation (CDG) Awareness Day

Many tips to go social!

1. Follow us and Hashtag like crazy using the world hashtag for 2016 at: #WorldCDGDay2016 

Follow us on Facebook: HERE and Twitter: HERE ADD MEDIA ADD HTML

2. Help us collecting many signatures for our Online Public Petition directed to World Health Organization (WHO) to declare 16th May as the annual World Congenital Disorders of Glycosylation (CDG) Awareness Day.​Sign HERE 

3. Share our official Digital Poster available HERE in your social media profiles:

The poster features Tereza (Czech Republic) and Phila (Finland), who are living with CDG. It doesn't matter whether you are organising a big event or holding a small action. 

4. Change your Facebook and Twitter cover and photo profile to the World Congenital Disorders of Glycosylation (CDG) Awareness Day Facebook and Twitter cover. 

Share it in your social profile with one of our proposed hashtags: #WorldCDGDay2016: Finding cures for CDG starts with Awareness. Proudly supporting 16th May as World CDG Awareness Day. 

5. Watch and Share in our social media profiles the Official clip of "Ordinary Life" by Very Jane with the following proposed message: 

#WorldCDGDay2016: This is the first single of the upcoming album by Very Jane due for release later in 2013. This video is dedicated to the memory of Estelle & Temperance Blechynden and to help raise awareness for the rare genetic disorder CDG 1a. CDG is a serious disease that encompass a wide variety of disorders and symptoms. There is no specific therapy for most forms of CDG.

Plenty of activities can be done on 16th May for a World CDG Awareness Day! 

1. Expose or present our infographics in hospitals, local schools, research laboratories or at your work place. 

Speak with the target institution about allowing you a place to expose the infographics or a time slot to use (for example, during the class's schedule or breakfast or lunch time). 

Many other ideas are found HERE.

2. Disseminate the CDG fairy-tale 

Ask for a timeslot to use (for example, during the class’s schedule or breakfast or lunch time). Eventually, you can ask if there is a group of 5 students keen to join you during the reading of the fairy-tale. 

3. Give talks about CDG using our slide decks ready to be used! See all information HERE. 

The slide decks are available under request writing to worldcdgawareness@gmail.com

CDG Event Locations

Help us cover the map with World CDG Awareness Day events across the world! This year, let's #CoverCDGDayMap and show the reach of World CDG Awareness Day with all of the events being planned across the world. We need your help! 

To cover the map, submit your event using the form below. ADD MEDIA ADD HTMLSpread the word with #CoverCDGDayMap and #WorldCDGDay2016 through social media: 

Facebook: HERE

Twitter: HERE

Join smiles and share them on our photo gallery and social media: 

1. Print out the fliers available HERE​.

2. While holding the flier, take a photo of yourself, someone else, or a group of people.

3. Share your photo with the flier on Facebook HERE, using the hashtag #WorldCDGDay2016 and the proposed tweets or Facebook posts available HERE.

4. UPLOAD YOUR PHOTO IN OUR GALLERY, go HERE

Go green! Think CDG!© 

CDG community campaign that encourages people to use green to show support for children and adults affected with Congenital Disorders of Glycosylation (CDG). 

Wear green, decorate the house with green lights, and put green ribbons and balloons on trees. 

Turn the town green for our CDG children and adults. Get creative. Put 16th May on the map HERE.Have a suggestion or question? 

Email us at: worldcdgawareness@gmail.com 

Why green?Green is an emotionally positive color, giving us the ability to love and nurture ourselves and others unconditionally. This is what CDG families do every day with strength and determination! 

"The garden of love is green without limit and yields many fruits other than sorrow or joy. Love is beyond either condition: without spring, without autumn, it is always fresh."-by Rumi.​

Join us in supporting all of the families who have a beloved one with CDG. Help us raise awareness.

Talk to government leaders and media

Disseminate among your government leaders and media the MANIFESTO that is directed to WHO and available HERE. 

Read the some paragraphs of the manifesto below: A

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. 

CDG are chronic serious genetic, life-altering and often life-threatening or fatal diseases due to multiple organ failure. The type and severity of problems associated with CDG vary widely among affected individuals, sometimes even among members of the same family. Walking, jumping, climbing ladders, running, reading, talking amongst other activities, prove to be difficult, often impossible in the majority of patients. The impact of this disorder goes beyond the physical manifestations of the disease. It includes economic burden, decreased productivity (both patient and caregivers), reduced social functioning, and lowered quality of life. 

Nowadays, despite the rapid advances in the field of Rare Diseases, fewer than 5% of rare diseases have drug therapies available.Thus, most of rare diseases, including most forms of CDG, still have no treatment options at all. Taking the risk on a drug for CDG children and adults may not promise returns as high as common drugs. Additionally, scientists are making great progress each day, but more funding for CDG research needs to be given. 

Continue reading HERE. 

AWARENESS for CDG is key, to accelerate therapeutic options! 

Please join us!

Help us raise Congenital Disorders of Glycosylation (CDG) awareness globally, in all countries of the world, add your name to our petition to make May 16th the World Awareness Day on Congenital Disorders of Glycosylation (CDG)! 

Get to know the faces of our CDG families and professionals! Watch the best of video recorded during the Second World Conference on CDG, held in Lyon (France), 2015! 

WE CAN MAKE A DIFFERENCE! YOU CAN MAKE A DIFFERENCE!

We are asking for your support to increase awareness and visibility for CDG. Please sign the online public petition available during February and March 2016 at:https://www.change.org/p/congenital-disorders-of-glycosylation-cdg-world-awareness-day-on-may-16th

Get the satisfaction of making a real difference in CDG children and adults lives while helping us volunteering for the World CDG Awareness Day. 

There's plenty you can do, so contact us at worldcdgawareness@gmail.com to get started. 

Be a proud volunteer and share it on Social Media! How? ​

All information is available click HERE.

Donate for our CDG-based research and AWARENESS PROJECTS!

The Portuguese Association for CDG (APCDG-DMR) is leaded by affected family members that volunteer in an altruistic manner. We do not receive government funding. We rely solely on donations in order to continue our projects.

Thus, we know how to do a lot with very modest budgets. However, we still need your donation contribution to help us do our work. Make a donation using Paypal, debit or credit card or bank transfer. Your donation will help fund advocacy efforts, awareness, education and research.

All details are found HERE.