#SweetThankU to all Families and Friends who got involved during World Congenital Disorders of Glycosylation (CDG) Awareness Day!

We appreciate the Time and Motivation all the community dedicated to boost CDG Awareness.
We submitted an application to WHO to declare 16th May as the annual World CDG Awareness Day. The process will take between 1 to 2 years for us to have feedback. Anyway, save the date 16th May 2017 to join forces around the world and increase visibility and awareness for CDG.


Starting TODAY and throughout this week we will be Sweet Thanking all that played a tremendous role in making May 16th World CDG Awareness Day a reality - YOU! Keep an eye on our social media networks:

Facebook Pages:
SindromeCDG  and World Congenital Disorders of Glycosylation - CDG Awareness Day 

Twitter Account: @CDG_Portugal

LinkedIN: Portuguese Association CDG
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We appreciate your help! #SweetThankU
Show you care, Be aware!

Meet Carlota Pascoal - She is CDG&Allies-PPAIN newest member!
Carlota has a BSc's degree in biochemistry and she is currently doing her MSc's thesis
Carlota will be unravelling the immunological aspects in CDG Patients. 

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Know more about Carlota and WG CDG & GlycoImmunology.

Please join us in welcoming her into our Community! 
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Best of Luck Carlota!!

Sign the #RAREvolution petition !
Its aim is to increase awareness and support for research into RARE Diseases worldwide!
Their listed policies changes include:

1. Increase allocation of resources
2. Promote a multi-disciplinary and coordinated approach
3. Adopt specific incentives policies
4. Leverage existing knowledge and optimize the use of existing drugs
5. Widen health economics criteria in considering the cost-effectiveness of RDs research
6. Adopt appropriate and internationally recognized rare disease classification systems
7. Invest in innovative diagnostic methods of rare diseases to enable early intervention
8. Set criteria for ante-natal and newborn screening and ethical controls
9. Recognize the expanding role of patient groups in contributing to develop and foster knowledge and awareness on rare diseases, and include patients at all levels in the development of policies, research agenda and protocols for specific rare diseases

 Show you care, sign NOW at http://chn.ge/2cqyEC7

Last Chance to Register for Tomorrow's Webinar "My Beautiful CHILD" on Sickle Cell Disease and Congenital Disorders of Glycosylation (CDG): Research, Advocacy, and Strong Communities.

Do it NOW at http://bit.ly/2cIMkpi.

See you There tomorrow!
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 For more information contact egl.marketing@emory.edu

A patient meeting for CDG patients will be held on Friday, October 21st 2016.

The meeting’s aim will be to provide more information about new therapies for CDG.
It will take place in the Auditorium IG 273  (purple- 2nd floor) at UZ Leuven, Herestraat 49, 3000 Leuven from 15:00 to 18:00.
Since this is the first meeting, the organizing committee is asking for feedback on the number of interested people, so that they can make appropriate arrangements and/or alterations.


Please contact the organization via email pascale.budts@uzleuven.be or carine.wierinckx@uzleuven.be or by phone  016/344649 or 016/343827

EURORDIS Annual Photo Contest has lauched its 2016 edition! It will be open until 14 December. Submitt your RARE photos at http://www.eurordis.org/photo-contest or on Instagram with #RareButReal2016. 

There are 3 categories in the EURORDIS Photo Contest: Public Prize, Expert's Choice, and the Instagram Prize. Winners will receive prizes!
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Show the World how COMMON beauty is among the RARE community.

In this year's Society for the Study of Inborn Errors of Metabolism (SSIEM) conference held in Rome, the CDG community was represented! APCDG had a booth and counted with the invaluable help of its volunteer Maria Monticelli. 

Here are some photographs of our booth and of Maria with Prof Jaak Jaeken and Dr. Dulce Quelhas. The latter shows the important networking and collaboration that exisits and is reinforced in events like this, among the CDG community.