Plan an event World CDG Awareness Day 2018

VERY IMPORTANT, PLEASE READ IF YOU USE OUR
World Congenital Disorders of Glycosylation (CDG) Awareness Day Toolkit:

Our work is publicly available to help the CDG community and related rare disease communities. Importantly, we do not receive government funding. We rely solely on donations in order to continue our projects.

​Consider to 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 at www.apcdg.com/donate.html THANKS!
The resources cannot be used for commercial purposes.
​For further questions or suggestions please contact: sindromecdg@gmail.com​

Plan an event for 16th May as the annual
World Congenital Disorders of Glycosylation (CDG) Awareness Day

Plenty of activities can be done on 16th May for a World Congenital Disorders of Glycosylation (CDG) Awareness Day!

REMEMBER, the materials may not be used for commercial or fundraising purposes.
Do you plan or do you want to plan an event to reinforce our request among the World Health Organization (WHO)  to declare 16th May as the annual World Congenital Disorders of Glycosylation (CDG) Awareness Day?

We can help you communicating and disseminating your event, or we can give ideas to set up an activity.

In that case write us to: worldcdgawareness@gmail.com
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Nothing will be as before! United to celebrate the 16th May as the World Congenital Disorders of Glycosylation (CDG) Awareness Day

EXPOSE OUR RESOURCES ABOUT CDG WITHIN LOCAL SCHOOLS, MEDICAL INSTITUTIONS, RESEARCH CENTERS OR YOUR WORK PLACE

STEPS                                         
  1. 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).
  2. Download and print our infographics to be exposed/distributed to the target audience. This is patient-friendly material directed to families, professionals and the overall society. It is publicly available for immediate printing at http://www.apcdg.com/resources.html If you need help please write to worldcdgawareness@gmail.com

GIVE TALKS

The following slide decks are available under request writing to worldcdgawareness@gmail.com
  • What is CDG?
  • What are the main signs and symptoms of PMM2-CDG (CDGIa)?
  • The symptomatic management of PMM2-CDG (CDGIa).
  • The roadmap for CDG diagnosis.
  • What is MPI-CDG?
STEPS                                         
  1. 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).
  2. Download our CDG awareness Kit to be used as inspiration during the production of your own powerpoint. These resources are available in English, French and Spanish. The Powerpoint presentation and videos from the World Conferences on CDG might help you to prepare your presentation. It is available at http://www.apcdg.com/education.html
  3. Give your 15-20 minutes talk by presenting your PowerPoint or the infographics and remind the audience to (1) Visit our Website; (2) Follow us on Facebook or to Contribute to our online fundraising campaign
  4. Take pictures and share a recap of your event with us on our  Facebook as well as on CDG Global Alliance Facebook page or APCDG Youtube Channel so we can feature it as well.

GIVE TALKS

Get involved by posting your event! Help us covering the World CDG Awareness Day map, send the details to us by filling the form below and we will post it on our website HERE.

CDG FAIRY-TALE A POWERFUL RESOURCE!
Is available in 11 languages

Tips on how to use this resource:
  • Disseminate the link of the CDG Fairy-tale within your Facebook and Email contacts. Available at “Glycoland and the coloured antennas”
  • Present it within a local library or school:
  1. 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
  2. Present the fairy-tale to your audience and remind the audience to (1) Visit our Website; (2) Follow us on Facebook or to Contribute to our online fundraising campaign 
  3. Take pictures and share a recap of your event with us on our  Facebook as well as on CDG Global Alliance Facebook page or APCDG Youtube Channel so we can feature it as well.

EVENTS WORLDWIDE

SUPPORT OUR RESEARCH THROUGH OUR ONLINE CDG FUNDRAISING CAMPAIGN

Fundraising benefit our organization greatly, as our non-profit association survives solely on the generosity and donations of our members, friends and family.  

Only 2 clicks at http://www.apcdg.com/get-involved1.html , and your friends and colleagues can make a huge difference in our CDG patients and families lives. It’s quick, easy, secure and you'll be contributing today!
How you can help us?
  • By sharing within your network the link of our website dedicated to collect donations http://www.apcdg.com/get-involved1.html
  • By making a single donation
  • By donating specifically to one research project. You can choose amongst the current project with whom we are partnering
  • By supporting our Fundraising CDG infusion campaign! (we only distribute CDG infusions across Europe. Our colleagues from CDG Care (USA) will deliver within USA).
In order to safeguard against fraud, all fundraising initiatives must be requested and authorized in advance. Additionally, partnership agreements to guarantee transparency are mandatory. To propose a fundraiser initiative, please contact us at sindromecdg@gmail.com
"Society needs to know that Congenital Disorders of Glycosylation (CDG) is a serious cause of death and disability. Patients and family members, suffer directly the consequences of living with a disease, for which the most forms do not have a cure", highlights Rosália Félix, mother to Princess Liliana (Portugal).

SOCIAL MEDIA RESOURCES TO HELP SPREADING THE WORD

Symbol "16th May as the annual World Congenital Disorders of Glycosylation (CDG) Awareness Day" 

CDG International Awareness Symbol is available on CDG CARE website


Tips to raise CDG awareness using Social Media on 16th May:
  1. Join us on Facebook (a page for this purpose will be soon available) 
  2. Use the CDG International Awareness Symbol on your Facebook profile picture & Twitter 
  3. Shop at CDG Community Store!! Help Raise CDG Awareness through the CDG Community Store (teddy bear, shirts, and more) available at CDG Care website 

Email signature:

How to get the Email signature that supports 16th May as the World Congenital Disorders of Glycosylation (CDG) Awareness Day?
  • By clicking directly in the image on your right, you can choose and save the email signature that suits you.

The Benefits of an Email Signature:
  1. An email signature shows your support to this initiative.
  2. An email signature is a promotion tool for our cause.
  3. An email signature is also a social networking tool.

Facebook banner

How to get the Email signature that supports 16th May as the World Congenital Disorders of Glycosylation (CDG) Awareness Day?
  • By clicking directly in the image on your right, you can choose and save the email signature that suits you.

Advantages of using this Facebook advertising:
  • The big advantage of Facebook advertising is how super-targeted we can make it.
  • We will see our potential reach.
  • It snowballs.

7 key reasons on why a World Congenital Disorders of Glycosylation (CDG) Awareness 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 CDGs 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 recognise the conditions and do not interpret the symptoms correctly.
  3. The close family and friends of a CDG patient, who are wonderfully supportive, most probably are not able to name what our beloved CDG patients have, or how it functions in their body.
  4. The probability to find a health care provider that knows what is CDG is extremely low.
  5. Most forms of CDG do not have a treatment.  Thus, quality of life and survival of CDG patients depend on research and funding.
  6. Given the scarce research funding currently available for rare diseases, diseases with lack of awareness such as CDG, represents a particular challenge for researchers working in this area.
  7. The research, the funding, and hopefully, the cures will come, but not if CDG remain unknown amongst the society! A World Congenital Disorders of Glycosylation (CDG) Awareness Day is urgently needed it!

16th May, the day of birth of Pf Jaak Jaeken, is the proposed day for the World Congenital Disorders of Glycosylation (CDG) Awareness Day.

WE CAN MAKE A DIFFERENCE! YOU CAN MAKE A DIFFERENCE!
Support us and Sign our Online Public Petition during the month of February 2016 and available at: https://www.change.org/p/congenital-disorders-of-glycosylation-cdg-world-awareness-day-on-may-16th
The necessary documentation for CDG patient advocacy groups, their representatives, families, friends and professionals to support this public petition is found at http://www.apcdg.com/world-cdg-awareness-day.html . Please read the manifesto and use the communication material publicly available for this purpose.
REMEMBER, the materials may not be used for commercial or fundraising purposes.

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