3rd WORLD
CONFERENCE CDG 2017
United Shaping The Future!
Report: Highlights
FACTS & FIGURES
Over 220 participants JOINED US for the 3rd World COnference on CDG.
Were you one of them?
If you where there and if you couldn't make it, see the top highlights of this unique event!
Were you one of them?
If you where there and if you couldn't make it, see the top highlights of this unique event!
<Click on the image to access the report>
<Click on the image to access the report>
Survey
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Make your Voice Heard!
Tell us what you liked and where do you think there is room for improvement. There are only 9 questions and 8 of them are multiple choice! It will take you 10min tops! Also, if you didn't have the chance to join us for the 3rd World Conference on CDG you can still participate in a 2-question survey, so that you can tell us what you would like to see in a future edition of this Families & Professionals unique event. Help us improve and meet your needs! We truly appreciate your feedback! Go to the survey HERE |
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Photo & Video Gallery
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Look at and remember some of the 3rd World Conference on CDG best moments!
What was your favourite? We just loved every single moment! |
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Speakers Presentations
***We deeply acknowledge all speakers of the 3rd World Conference on CDG for sharing their knowledge and slides***
Thank you!
Thank you!
IMPORTANT, PLEASE READ IF YOU USE OUR EDUCATIONAL RESOURCES:
All our work is publicly available to help the CDG community. Importantly, our educational resources are done by professionals and volunteers. If you use these CDG tutorials, please refer http://www.apcdg.com/resources.html as source of information. This, help us to ensure that families and professionals know the original source of information. Additionally, we are constantly updating the information, thus by referring http://www.apcdg.com/resources.html all community will be receiving updated information. THANKS!
All our work is publicly available to help the CDG community. Importantly, our educational resources are done by professionals and volunteers. If you use these CDG tutorials, please refer http://www.apcdg.com/resources.html as source of information. This, help us to ensure that families and professionals know the original source of information. Additionally, we are constantly updating the information, thus by referring http://www.apcdg.com/resources.html all community will be receiving updated information. THANKS!
SLIDES 3rd World Conference on CDG for Families & Professionals
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Welcome
Vanessa Ferreira
The Portuguese Association for CDG (APCDG) and CDG & Allies - PPAIN
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CDG: A story about sugars and proteins
Jaak Jaeken
Centre for Metabolic Diseases, University Hospital Gasthuisberg Leuven, Belgium.
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Biochemical aspects of CDG
Dirk Lefeber
Nijmegen Center for Disorders of Glycosylation, Netherlands
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Diagnostic tools in CDG
Christian Thiel
Center for Child and Adolescent Medicine, Universität Heidelberg, Heidelberg
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Gastrointestional Problems in CDG
Stephanie Grunewald
Great Ormond Street Hospital for Children
NHS Foundation Trust, London, United Kingdom |
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CDG Liver Questionnaire
Dorinda Marques-da-Silva
The Portuguese Association for CDG (APCDG) and CDG & Allies - PPAIN
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This work is currently revision for publication. As soon as we have a final outcome we make it available.
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CDG Neurology: What you need to know
Mercedes Serrano
Child Neurologist and CIBERER researcher at the San Juan de Déu Children's Hospital, Barcelona, Spain.
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The role of the cerebellum in cognitive and behavior:beyond coordination in the Central Nervous System
Marc Patterson
Dpt of Neurology, Pediatrics and Medical Genetics, Mayo Clinic, USA
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Treatment in CDG
Eva Morava
Tulane University Medical School Hayward Genetics Center, USA and KU Leuven, Belgium
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Physioterapy in CDG Patients
Chantal Verhille
University Hospitals, KU, Leuven, Belgium
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Psychomotor Therapy and Body Experience
Dolores Gamito
Special Education Teacher specialized in Psychomotricity, Lisbon, Portugal
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Educational Digital Resources
Joana Peixinho
CDG mother and Special Education Teacher, Porto, Portugal
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Communication Strategies for CDG
Merell Liddle
CDG mother, patient advocate and health psychologist, Australia
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The needs of people affected by CDG and community-framed strategies to address them
Cláudia de Freitas
PhD, Social sciences researcher at ISCTE-IUL and Insitituto de Saúde Pública, Portugal
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This work is currently revision for publication. As soon as we have a final outcome we make it available.
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Patient Reported Outcomes for CDG
Liz Forbat
Faculty of Health Sciences, Australian Catholic University of Canberra, Australia
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Bridging the gaps between health, social and local services to improve care of people living with rare and complex conditions
Raquel Castro
Social Policy Senior Manager, EURORDIS - RareDiseases Europe, Barcelona, Spain
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NIH Natural History Study: Clincal and Basic Investigations into Known and Unknown CDG's
Lynne Wolfe
National Human Genome Research Institute (NHGRI), Office of Rare Diseases, Undiagnosed Diseases Program, USA
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CDG - Envisioning the Future
Hudson Freeze
Director of the Human Genetics, Sanford Burnham Institute, USA
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I love my Life - Dancing with Morgan
Morgan Liddle
CDG Patient
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2019 World Conference Edition: So, WHERE do we meet again?
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The venue for the 4th edition of World Conference on CDG for Families & Professionals already has a venue - It's Lisbon (the portuguese capital).
For the next edition we will count with the help of NOVA University, which has been a close collaborator of CDG & Allies - PPAIN (learn more HERE). Hope to see you all again in Lisbon! Here are a few pictures so that you can get acquainted with the portuguese mood! |
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World Conference on CDG for families and professionals is an initiative of the Portuguese Association for CDG (APCDG)
Newsletter
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