APCDG - Congenital Disorders of Glycosylation
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3rd WORLD 
​CONFERENCE CDG

Leuven, Belgium - 15 and 16 July 2017

SAVE THE DATE!

3rd WORLD 
CONFERENCE CDG 2017

United Shaping The Future!


"3rd World Conference on Congenital Disorders of Glycosylation (CDG)
for families and professionals: United shaping the future for CDG"
Leuven, Belgium - 15 and 16 July 2017.

“Nothing about us, without us”- James Charlton


The "World Conference on Congenital Disorders of Glycosylation (WCCDG) for Families and Professionals” is a biennial event fruitfully designed in collaboration with leading experts in the field of CDG: families and professionals work together to exchange knowledge, experiences, needs and perspectives.
The largest World event that gathers Congenital Disorders of Glycosylation (CDG) families and professionals.
With keynotes and roundtables, this event is designed to tackle the most important challenges facing the Congenital Disorders of Glycosylation (CDG) community!
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

Join the community!
Join the:"I go to the WCCDG Leuven,2017!


WELCOME MESSAGE

Dear families, professionals, colleagues and friends:
 
It is with great pleasure that we invite you to the "3rd World Conference on CDG: United shaping the future for CDG" planned to be held in  Leuven, Belgium - 15 and 16 July 2017.
 
This World Conference on CDG will provide a patient-tailored program which will highlight important information in the clinical and research area, as we progress to our goal of better care and improvement of the quality of life of people living with CDG and related metabolic rare diseases.
 
The Scientific-Medical and Family organizing committee is sure that this unique event will be unforgettable and look forward to welcoming you to this Third World CDG conference.
 
We would like to express our thanks to all experts, professionals and families, for their outstanding contributions and in particular to the members of the committees for their contribution and helpful support. Likewise we would also 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! 
Laying the groundwork for future stages of research and development based on family’s needs is the most rewarding aspect of this World Conference–boosting translational research will be a dream come true!

We are looking forward to seeing you in Leuven!
With our warmest regards,
On behalf of the organizing committee.

3rd World Conference on CDG AGENDA

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Agenda - WCCDG_2017.pdf
File Size: 1545 kb
File Type: pdf
Download File


Family volunteer organizing committee,
World Conference CDG for families and professionals 15 and 16 July 2017 in Leuven, Belgium

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Vanessa Ferreira, PhD, MBA
Sister to Princess Lili
Portuguese Association CDG

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Lut De Baere
BOKS Belgium Association for Children and Adults suffering  for Metabolic Diseases

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Andrea Berarducci, JD, MHA, FACMPE
Mother to Bianca
CDG CARE (USA)

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Konstantin Feinberg, PhD
Father to Ethan and molecular neurobiology researcher
Canada

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Duncan Webster, MA, MD, FRCPC
Father to Mimi and physician on
infectious diseases
FoG (Canada)

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Richard Waddell, father to Fiona Waddell. As a father to Fiona, he has been part of the CDG Family for about eighteen years
The Netherlands


Local volunteer Medical and Scientific organizing committee,
World Conference CDG for families and professionals 15 and 16 July 2017 in Leuven, Belgium

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Pf Eva Morava, MD, PhD
USA and Belgium

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Pf David Cassiman, MD, PhD
Belgium

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Pf Jaak Jaeken, MD, PhD
Belgium

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Dr Dulce Quelhas
Portugal

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Dr Mercedes Serrano, MD, PhD
Spain


***Important Announcements***​
REGISTRATIONS are now officially CLOSED
​Payment donations must be received until JUNE 10TH


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Read the Press release below (EN and PT)​
press_release_registrationswcdgc2017_eng.pdf
File Size: 387 kb
File Type: pdf
Download File

press_release_registrationswcdgc2017_pt.pdf
File Size: 317 kb
File Type: pdf
Download File

Information about conference speakers is available  HERE
Conference Booklet is available HERE
​

Follow us on social media to get up-dates
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If you have any question or doubts, please contact the organizing committee at
​
worldconferencecdg2017@gmail.com ​

Who will be the World Conference on CDG Speakers?

Information about the 3rd World Conference on CDG on 15-16th July 2017 in Leuven (Belgium), including biographies, are available HERE.
​Take you time to get to know them better!

in full collaboration with World CDG patient advocacy groups and its representatives

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AND
 in collaboration with the European Reference Network for Rare Metabolic Diseases - MetabERN (know more HERE)
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VOLUNTEERS

Responsible for Media and Communication Resources

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Fiona Waddell represents CDG within VKS, the Dutch Umbrella organization for metabolic diseases. When she was fifteen years old Fiona was diagnosed with MPI-CDG. She was the second patient in the world who was diagnosed with this illness.

Fiona was the first CDG patient who has had a liver transplant and due to the liver transplant, now she can lead a healthy life . She is journalist and our current major goal is to boost awareness for CDG community by (1) representing CDG within major leading Rare disease events, (2) volunteering in the production of many resources for CDG and (3) being responsible for media and communication resources for the 3rd World Conference on CDG 2017.

Read more about Fiona at the Rare Commons interview "CDG patient Fiona hopes to create greater CDG awareness by using her journalistic skills"
Fiona's biography is available at http://www.fionawaddell.net/Pagina/Biografie.htm

Email: fmmwaddell@gmail.com

Team of translators

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Etienne Barrier (father to Emily),
will help translating and spreading
information from English to French.
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Barbara Vulso, mother to Leo and singer.
She will help translating and spreading
information from English to Italian.

Liaison dedicated to families with rarer CDG types

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Isabelle Bros, mom to Jeanne who suffers ALG11-CDG (CDG 1p), and responsible for regional social housing in France. She is doing tremendous efforts to connect with other families, to increase awareness and to learn more about her daughter's condition.

There are less that 10 patients reported in the literature with ALG11-CDG (CDG 1p).  Because of high variety of CDG symptoms and the resemblance to other diseases, diagnosis of this CDG type might be demanding.

Isabelle, will liaise families affected by rarer CDG's that are coming to Leuven. She will also be moderating the conference group discussion for these group of diseases planned to be held during the conference in Leuven (2017).

More information about Jeanne's journey at: http://jeannepitchoune.over-blog.com/

Speaker line-up was announced on September 2016


The World Conference on CDG for families and professionals: brings families and professionals together from accross the world to accelerate CDG patient-centered research. The ultimate goal: To change the course of CDG, and  find cures in our lifetime.

Online Registrations will be open from February to June 2017
REGISTER HERE


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 "3rd World Conference on CDG: United shaping the future for CDG" will be held in  Leuven, Belgium - 15 and 16 July 2017.
  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