APCDG - Congenital Disorders of Glycosylation
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4th WORLD 
​CONFERENCE on CDG

Lisbon, Portugal - 26 and 27 July 2019

SAVE THE DATE!

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


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


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.

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MSc RITA FRANCISCO
Talks: Pharmaceutical drug develoment in Rare Diseases on 26th July & ImmunoCDGQ-lessons learned on 27th July​
rita_francisco_bio.pdf
File Size: 169 kb
File Type: pdf
Download File

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Prof EVA MORAVA
Talks: Clycomine's CDG Natural History on 26th July & Galactose clinical trial on 27th July​
prof_eva_morava_bio.pdf
File Size: 190 kb
File Type: pdf
Download File

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Dr RICK THOMPSON
Talk: Drug repositioning to accelerate orphan drug development on 26th July
dr_rick_thompson_bio.pdf
File Size: 113 kb
File Type: pdf
Download File

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Dr FRANÇOIS FOULQUIER
Talk: CRISPR/Cas for therapy discovery on 26th July​
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Dr PERRY CALIAS
Talk: How did Cerecor do it? The case study of FDA approved CDG therapy on 27th July
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Prof PINA ANDREOTTI
Talk: Genetic modifiers for PMM2-CDG on 26th July
pf_pina_andreotti_bio.pdf
File Size: 105 kb
File Type: pdf
Download File

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Prof LUÍSA BARROS
Talk: Coping Strategies in CDG Families on 26th July
prof_luísa_barros_bio.pdf
File Size: 183 kb
File Type: pdf
Download File

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Prof PETER WITTERS
Talk: Dietary therapies on 27th July​
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Dr BEGOÑA NAFRÍA
Talk: Share4Rare project on 27th July
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Dr STEPHANIE GRUNEWALD
Talk: Biomarkers as invaluable tools for CDG diagnosis and therapeutic advance on 26th July
dr_stephanie_grunewald_bio.pdf
File Size: 166 kb
File Type: pdf
Download File

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Dr LYNNE WOLFE
Talk:NIH Natural History study on 26th July
dr_lynne_wolfe_biography.pdf
File Size: 88 kb
File Type: pdf
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Dr ANTONIO MARTINEZ
Talk:Early predictive dysmorphic features of PMM2-CDG on 26th July
dr_antonio_martinez-monseny_bio.pdf
File Size: 123 kb
File Type: pdf
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PhD student PAOLA DE HAAS
Talk: Zebrafish model for PMM2-CDG​ on 26th July
paola_de_haas_bio.pdf
File Size: 76 kb
File Type: pdf
Download File

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INêS ALVES
Talk: How the patient community can be empowered to get involved in drug development on 27th July​
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Prof RITA BARONE.
Talk: Movement disorders as clinical features of CDG on 27th July
pf_rita_barone_bio.pdf
File Size: 64 kb
File Type: pdf
Download File

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Dr ALP BASAT
Talk: Advances of OrphaLabs for Glycosylation Disorders on 27th July​
biography_dr_alp_basat.pdf
File Size: 150 kb
File Type: pdf
Download File

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Dr MERCEDES SERRANO
Talk: Is drug repositioning the future? on 27th July​
dr_mercedes_serrano_bio.pdf
File Size: 87 kb
File Type: pdf
Download File

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Prof DAVID COMAN
Talk: Australian CDG network on 27th July
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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_maurizio_scarpa_bio.pdf
File Size: 62 kb
File Type: pdf
Download File

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Dr TERESA SARDON
Talk: Systems Biology to boost therapies for CDG and related diseases on 26th July​
dr_teresa_sardon_bio.pdf
File Size: 75 kb
File Type: pdf
Download File

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Prof ANTONIO PINEDA
Talk: Metabolomics to accelerate CDG and related diseases therapies on 26th July
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Dr ANDREW EDMONDSON
Talk: Mouse model for PMM2-CDG on 27th July​
dr_andrew_edmondson_bio.pdf
File Size: 116 kb
File Type: pdf
Download File

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Dr DORINDA SILVA
Talk: Challenges in CDG diagnosis on 26th July​
dr_dorinda_silva_bio.pdf
File Size: 162 kb
File Type: pdf
Download File

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Dr RUQAIAH ALTASSAN
Talk: PMM2-CDG guidelines and standards of care on 27th July
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Dr PATRICE RIOUX
Talk: Liposomes for CDG on 27th July​
dr_patrice_rioux_bio.pdf
File Size: 81 kb
File Type: pdf
Download File

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Dr ETHAN PERLSTEIN
Talk: PMM2-CDG PearlQuest on 27th July​
dr_ethan_perlstein_bio.pdf
File Size: 59 kb
File Type: pdf
Download File

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ANDREA MILLER (CDG CARE)
Talk: Patient's registries: CDG Care Connect on 26th July​
andrea_miller_bio.pdf
File Size: 103 kb
File Type: pdf
Download File

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Prof GONÇALO VALADÃO
Talk: Artificial Intelligence (AI): an introduction on 26th July​
prof_gonçalo_valadão_bio.pdf
File Size: 90 kb
File Type: pdf
Download File

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Dr CATARINA BRITO
Talk: Modeling diseases processes in a dish: induced pluripotent stem cells (iPSCs)  on 26th July​
dr_catarina_brito_bio.pdf
File Size: 111 kb
File Type: pdf
Download File

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ALASTAIR KENT
Talk: Drug approval and market access: Can patients make a difference? on 27th July
alastair_kent_bio.pdf
File Size: 60 kb
File Type: pdf
Download File

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Prof DULCE QUELHAS
Talk: Opportunities for CDG diagnosis on 26th July​
pf_dulce_quelhas_bio.pdf
File Size: 108 kb
File Type: pdf
Download File

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MSc CARLOTA PASCOAL
Talk: Are patient's voices finally being heard? on 27th July​
msc_carlota_pascoal_bio.pdf
File Size: 158 kb
File Type: pdf
Download File

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Prof BÉLEN PÉREZ
Talk: Chaperones for PMM2-CDG on 27th July​
prof_belén_pérez_bio.pdf
File Size: 23 kb
File Type: pdf
Download File

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Dr VANESSA FERREIRA
Talk Patients leading the way on 27th July
dr_vanessa_ferreira_bio.pdf
File Size: 127 kb
File Type: pdf
Download File

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!

final_booklet_wccdg_2019.pdf
File Size: 4184 kb
File Type: pdf
Download File

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)?
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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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AND
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:
  1. 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.
  2. When the event is close, use the World Conference Symbol on your Facebook profile picture & Twitter page !
  3. Change your Facebook cover to the World Conference on CDG  Facebook cover (see toolkit below)
  4. Disseminate the infographic dedicated to explain the important benefits of this gathering event (see toolkit below).
  5. 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:
  1. strengthening global awareness of these  diseases,
  2. fighting geographic isolation that impacts families and professionals,
  3. sharing knowledge and experiences,
  4. potentiating visibility of the work performed by patient representatives and professionals and
  5. identifying areas in which international collaboration can have an immediate impact on the life quality of these families

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.

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.

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. 

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

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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)

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  • About US
    • What we do
    • Who we help >
      • Research
  • Resources
    • Rare CDG
    • Publications
    • Guia Metabolica
    • CDG Facts
    • Task Force CDG Communication >
      • PMM2-CDG (CDG Ia)
      • PGM1-CDG (CDG It)
      • ALG6-CDG (CDG Ic)
  • EDUCATION
  • Awareness
    • Get involved World CDG Awareness Day 2019 >
      • Go Social World CDG Awareness Day 19
      • Spread World CDG Awareness Day 19
      • Plan An Event World CDG Awareness Day 19
      • Frame your CDG Awareness Campaign 19
      • Go green! Think CDG! ©Campaign 19
      • Volunteer World CDG Awareness Day 19
      • Press kit World CDG Awareness Day 19
    • Map of events for World CDG Awareness Day 2019
    • CrowdCDG
    • Awareness Day 2018
    • Awareness Day 2017
    • Awareness Day 2016
    • Rare Diseases
  • Community
    • Join Us - Membership
    • CDG Patient Groups
    • Empowerment
  • Events
    • 1st CDG Satellite Meeting
    • Speakers - World Conference on CDG 2019
    • Registrations - World Conference on CDG 2019
    • Poster submission - World Conference on CDG 2019
    • Follow up - World Conference on CDG 19
    • Volunteer Registration - World Conference on CDG 2019
    • Previous Edition World Conference on CDG 2017 >
      • Follow up - World Conference on CDG 17
      • Speakers - World Conference on CDG 17
  • DONATE
  • BLOG