WORLD CDG ORGANIZATION
World Congenital Disorders of Glycosylation Organization (WCDGO) is the unified voice of people living with Congenital Disorders of Glycosylation (CDG). We are here to transform the world’s understanding of CDG and advocate for those living with CDG. WCDGO provides a strong common voice with governments, researchers, clinicians and industry to promote research, diagnosis, treatment and services for CDG.
CDG CANADA
CDG Families Canada is a group that has been created to provide CDG parents, family members, and caregivers, with a safe and caring place to share ideas, ask questions, vent their frustrations, help navigate the Canadian healthcare system, seek out support and advice, and to know there are virtual shoulders to lean on.
CDG CARE
CDG CARE (Community Alliance and Resource Exchange) is a nonprofit 501(c)(3) organization founded by parents seeking information and support for a group of disorders known as Congenital Disorders of Glycosylation (CDG).
Our mission is to promote greater awareness and understanding of CDG, to provide information and support to families affected by CDG, and to advocate for and fund scientific research to advance the diagnosis and treatment of CDG.
CDG HUB
CDG Hub is a nexus for curated information on more than 170+ CDG types, clinical trials, research models and resources, including a database of CDG medical experts and researchers worldwide. CDG Hub aims to unite the global CDG community, increase public awareness, and inspire collaborative research to advance scientific discoveries.
The Portuguese Association for CDG and other Rare Metabolic Diseases (APCDG-DMR) is a family non-profit organisation entirely run by volunteers. Their efforts are focused on forming a multi-stakeholder network, aimed at bringing together families, patient organisations, clinicians, researchers, healthcare professionals and pharmaceutical companies.
Dear CDG families, friends, relatives and acquaintances,
Welcome to the new website of the Federal Association for CDG Syndrome (BDG) eV, aka Glycokids! Here you'll find current information about our work as well as information about the syndrome itself.
Have fun browsing the site!
The Glycokids
We are very grateful to have had the opportunity to host your communities and to provide information and support for rare disease families around the world. Thank you for collaborating to foster such a kind and supportive environment.
Kind Regards,
RareConnect Team
EUROGLYCANET
Research Network: EUROGLYCANET: a European network focused on congenital disorders of glycosylation.
Resources
The following researchers have assisted with Foundation Glycosylation research projects:
- Thomas Pulinilkunnil, PhD --- Dalhousie Medicine New Brunswick
- Petra Kienesberger, PhD --- Dalhousie Medicine New Brunswick
- Purvi Trivedi, PharmM --- Dalhousie Medicine New Brunswick
- Rattina Dasse Nadaradjan --- Dalhousie Medicine New Brunswick
- Chris Martyniuk, PhD --- University of New Brunswick Saint John
- Bryan Crawford, PhD --- University of New Brunswick Fredericton
- Sherryl Taylor, PhD --- University of Alberta