4th WORLD
CONFERENCE on CDG 2019
The CDG road: from diagnosis to therapies!
4th World Conference on Congenital Disorders of Glycosylation (CDG) for Families and Professionals “The CDG road: from diagnosis to therapies”
Lisbon, Portugal - 26 and 27 July 2019.
“Nothing about us, without us”- James Charlton
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Dear families, professionals, colleagues and friends:
It is with great pleasure that we invite you to the "4th World Conference on CDG: The CDG road: from diagnosis to therapies" planned to be held in Lisbon, Portugal - 26 and 27 July 2019. Here you will find all the information you need about the experts who will be sharing their knowledge and expertise with ALL at the 4th World Conference on CDG. Taking into account the genesis of this Conference, among speakers there will be: Clinicians, Health Professionals, Researchers and Families so that every VOICE is heard and every CDG Community stakeholder is effectively represented. In this section you will have access to the speakers biographies, in case you would like to learn more about their professional and personal paths. We would like to express our appreciation to the speakers, as well as to the invited chairs for their careful preparation of the invited sessions. CDG families together with professionals can make the difference! We are looking forward to seeing you in Lisbon! With our warmest regards, On behalf of the organizing committee. |
WCCDG Lisbon 2019 SPEAKERS
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Read the Speakers biographies of the World Conference on CDG for families and professionals 26 and 27 July 2019 in Lisbon, Portugal
The final agenda is available HERE.
MSc RITA FRANCISCO
Talks: Pharmaceutical drug develoment in Rare Diseases on 26th July & ImmunoCDGQ-lessons learned on 27th July 
Prof EVA MORAVA
Talks: Clycomine's CDG Natural History on 26th July & Galactose clinical trial on 27th July
Dr RICK THOMPSON
Talk: Drug repositioning to accelerate orphan drug development on 26th July
Dr FRANÇOIS FOULQUIER
Talk: CRISPR/Cas for therapy discovery on 26th July 
Dr PERRY CALIAS
Talk: How did Cerecor do it? The case study of FDA approved CDG therapy on 27th July 
Prof PINA ANDREOTTI
Talk: Genetic modifiers for PMM2-CDG on 26th July
Prof LUÍSA BARROS
Talk: Coping Strategies in CDG Families on 26th July
Prof PETER WITTERS
Talk: Dietary therapies on 27th July 
Dr BEGOÑA NAFRÍA
Talk: Share4Rare project on 27th July |
Dr STEPHANIE GRUNEWALD
Talk: Biomarkers as invaluable tools for CDG diagnosis and therapeutic advance on 26th July
Dr LYNNE WOLFE
Talk:NIH Natural History study on 26th July
Dr ANTONIO MARTINEZ
Talk:Early predictive dysmorphic features of PMM2-CDG on 26th July
PhD student PAOLA DE HAAS
Talk: Zebrafish model for PMM2-CDG on 26th July
INêS ALVES
Talk: How the patient community can be empowered to get involved in drug development on 27th July 
Prof RITA BARONE.
Talk: Movement disorders as clinical features of CDG on 27th July
Dr ALP BASAT
Talk: Advances of OrphaLabs for Glycosylation Disorders on 27th July
Dr MERCEDES SERRANO
Talk: Is drug repositioning the future? on 27th July
Prof DAVID COMAN
Talk: Australian CDG network on 27th July |
Prof MAURIZIO SCARPA
Talks: A European patient registry for Rare Metabolic Diseases on 26th July & MetabERN: an European reference network to boost therapies for CDG on 27th July
Dr TERESA SARDON
Talk: Systems Biology to boost therapies for CDG and related diseases on 26th July
Prof ANTONIO PINEDA
Talk: Metabolomics to accelerate CDG and related diseases therapies on 26th July 
Dr ANDREW EDMONDSON
Talk: Mouse model for PMM2-CDG on 27th July
Dr DORINDA SILVA
Talk: Challenges in CDG diagnosis on 26th July
Dr RUQAIAH ALTASSAN
Talk: PMM2-CDG guidelines and standards of care on 27th July 
Dr PATRICE RIOUX
Talk: Liposomes for CDG on 27th July
Dr ETHAN PERLSTEIN
Talk: PMM2-CDG PearlQuest on 27th July
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ANDREA MILLER (CDG CARE)
Talk: Patient's registries: CDG Care Connect on 26th July
Prof GONÇALO VALADÃO
Talk: Artificial Intelligence (AI): an introduction on 26th July
Dr CATARINA BRITO
Talk: Modeling diseases processes in a dish: induced pluripotent stem cells (iPSCs) on 26th July
ALASTAIR KENT
Talk: Drug approval and market access: Can patients make a difference? on 27th July
Prof DULCE QUELHAS
Talk: Opportunities for CDG diagnosis on 26th July
MSc CARLOTA PASCOAL
Talk: Are patient's voices finally being heard? on 27th July
Prof BÉLEN PÉREZ
Talk: Chaperones for PMM2-CDG on 27th July
Dr VANESSA FERREIRA
Talk Patients leading the way on 27th July
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This page is dedicated to the various experts: Physicians, therapists, nurses, researchers, parents and all other Professional who will be the 4th World Conference on CDG Speakers.
It is our pleasure to introduce them to YOU - Meet them!
Conference Booklet available HERE!
It is our pleasure to introduce them to YOU - Meet them!
Conference Booklet available HERE!
| final_booklet_wccdg_2019.pdf |
If you have any doubts or questions, please contact the organizing committee at worldcdgconference2019@gmail.com
Did you know that...
This Conference is organized in collaboration with the European Reference Network for Rare Metabolic diseases - MetabERN (know more HERE)?
AND
in collaboration with the Applied Molecular Biosciences Unit (UCIBIO) and the Faculty of Sciences and Technology of the Nova University of Lisbon (FCT-UNL) - know more HERE.
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with the endorsement of the Portuguese Society of Metabolic Diseases (SPDM) and of the Society for the Study of Inborn Errors of Metabolism (SSIEM) - know more HERE and HERE.
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Instructions for Formal Oral Presentations at the World Conference on CDG
The instructions for the speakers and moderators will be available soon!
The "World Conference on Congenital Disorders of Glycosylation for Families and Professionals" toolkit to boost awareness
How you can get involved in the "World Conference on Congenital Disorders of Glycosylation for Families and Professionals" activities?
STEPS:
Follow the updated information on http://www.apcdg.com/events.html
- Join us on Facebook and be updated on the "4th World Conference on CDG: The CDG road: from diagnosis to therapies" will be held in Lisbon, Portugal - 26 and 27 July 2019.
- When the event is close, use the World Conference Symbol on your Facebook profile picture & Twitter page !
- Change your Facebook cover to the World Conference on CDG Facebook cover (see toolkit below)
- Disseminate the infographic dedicated to explain the important benefits of this gathering event (see toolkit below).
- Be a volunteer! We need volunteers to assist in several activities. For detailed information please visit http://www.apcdg.com/get-involved1.html
Follow the updated information on http://www.apcdg.com/events.html
Symbol "World Conference on Congenital Disorders of Glycosylation for Families and Professionals"
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The "World Conference on Congenital Disorders of Glycosylation for Families and Professionals" Symbol was selected by our World CDG community through a votation process in 2015.
It recognizes the continuous efforts that families and professionals, are doing united to boost research. The urgent goal: to achieve a better quality of life for our CDG children and adults in our lifetime. It is our hope that the logo will make the conference easily recognizable and memorable at the international level. Importantly, it will boost visibility for CDG and its community needs. |
Infographic "World Conference on Congenital Disorders of Glycosylation for Families and Professionals"
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This event was created and initiated by the Portuguese Association for CDG and related Rare Metabolic Diseases (APCDG-DMR) with four main objectives:
To learn more about the First and Second World Conference on Congenital Disorders of Glycosylation for Families and Professionals please visit http://www.apcdg.com/education.html |
Facebook cover "World Conference on Congenital Disorders of Glycosylation for Families and Professionals"
When the event is close, change your Facebook cover to the World Conference on CDG Facebook cover. You just have to save one of the covers available below.
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Email signature
When the event is close, use our Email signature to spread the word about the World Conference on CDG. You just have to save one of the emails signature available below.
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Video
Watch and Share the video that summarizes the best moments lived in the Second World Conference on CDG. It gives a simple, yet informative explanation of what means your attendance during the next World Conference on CDG.
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If you wish to learn on how to boost World CDG Awareness, visit our World CDG Awareness toolkit available at http://www.apcdg.com/awareness.html
The World Conference on CDG for families and professionals is supported by the generosity of the following organizations
Gold generosity
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Silver generosity
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Bronze generosity
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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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