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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Konstantin Feinberg, PhD
Father to Ethan and molecular neurobiology researcher Canada |
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 |
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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 |
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/ |
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.
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. |
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 |
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Newsletter
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