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
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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
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Join the community!
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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.
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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Family volunteer organizing committee,
World Conference CDG for families and professionals 15 and 16 July 2017 in Leuven, Belgium
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Konstantin Feinberg, PhD
Father to Ethan and molecular neurobiology researcher 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
Pf Eva Morava, MD, PhD
USA and Belgium |
Pf David Cassiman, MD, PhD
Belgium |
Pf Jaak Jaeken, MD, PhD
Belgium |
Dr Dulce Quelhas
Portugal |
Dr Mercedes Serrano, MD, PhD
Spain |
***Important Announcements***
REGISTRATIONS are now officially CLOSED
Payment donations must be received until JUNE 10TH
REGISTRATIONS are now officially CLOSED
Payment donations must be received until JUNE 10TH
Read the Press release below (EN and PT)
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Information about conference speakers is available HERE
Conference Booklet is available HERE
Follow us on social media to get up-dates
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
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!
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)
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
Etienne Barrier (father to Emily),
will help translating and spreading information from English to French. |
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:
Follow the updated information on http://www.apcdg.com/events.html
- 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.
- 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
Silver generosity
Bronze generosity
World Conference on CDG for families and professionals is an initiative of the Portuguese Association for CDG (APCDG)
Newsletter
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