#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:
SindromeCDG and World Congenital Disorders of Glycosylation - CDG Awareness Day
Twitter Account: @CDG_Portugal
LinkedIN: Portuguese Association CDG
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.
Know more about Carlota and WG CDG & GlycoImmunology.
Please join us in welcoming her into our Community!
Best of Luck Carlota!!
SSIEM Rome 2016: Maria's Report
The Society for the Study of Inborn Errors of Metabolism (SSIEM) is a widely renowned and respected, worldwide, entity in the field of inherited metabolic disorders and related topics. It promotes knowledge and exhange of ideas and views among different and diverse professionals.
This year's annual meeting was held in Rome. Both CDG and APCDG were represented in the meeting!
There was a number of interesting talks by important physicians and researchers on different CDG-related topics.
Our Volunteer Maria Monticelli had the opportunity to be present, witness the talks as well as to represent the CDG community (APCDG had a booth, where information about CDG was available). Moreover, the most recent CDG&Allies-PPAIN research work “Liver involvement in Congenital Disorders of Glycosylation – Literature review” was accepted and exposed as a scientific poster.
Based on what Maria saw, learned and did at SSIEM Rome 2016, she wrote a report, so that the entire CDG community and the general public could have access to the information and knowledge that were exchanged during this relevant scientific gathering.
Thank you Maria!
Download the document below!.
Sign the #RAREvolution petition !
Its aim is to increase awareness and support for research into RARE Diseases worldwide!
Their listed policies changes include:
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!
For more information contact firstname.lastname@example.org
CDG Meeting in UZ Leuven
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 email@example.com or firstname.lastname@example.org or by phone 016/344649 or 016/343827
EURORDIS Annual Photo
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!
Show the World how COMMON beauty is among the RARE community.
EURORDIS Annual Awards
EURORDIS Annual Awards Contest is now open!
You can nominate your rare disease champion, an individual, rare disease patient group or company, who you feel is making a difference in the rare disease community.
The contest will be open until the 31st October 2016 and the winner will be announced at the Awards Ceremony broadcasted on Tuesday, 21st February 2017.
You can submit your nomination at http://www.eurordis.org/content/eurordis-awards-nominations
SSIEM Rome 2016
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.
Moreover, we would like to share with you some highlights of SSIEM 2016 -
3 great lectures:
Prof Jaeken's amazing lecture on CDG;
Prof Zeviani talk on mitochondrial disease and;
Saskia Workman pitch on discovering a novel treatable IMD #SSIEM2016
Webinar "My Beautiful CHILD" Spotlights Sickle Cell Disease and Congenital Disorders of Glycosylation (CDG): Research, Advocacy, and Strong Communities
Save the date September 20th!
The webinar "My Beautiful CHILD" Spotlights Sickle Cell Disease and Congenital Disorders of Glycosylation (CDG): Research, Advocacy, and Strong Communities will help you to better understand these complex genetic diseases! Don't miss this opportunity!
The talks will be given by Prof Eva Morava, physician, researcher and CDG Key Opinion Leader and by Andrea Berarducci, patient advocate.
Register quick,free and simple athttp://bit.ly/2cIMkpi.
For more information contact email@example.com
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