Helpful Websites
- http://cdgcare.org/ — 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). They promote greater awareness and understanding of CDG, to provide information and support to families affected by CDG, and to advocate for scientific research to advance the diagnosis and treatment of CDG.
- http://www.apcdg.com/ — Portuguese Association for CDG and other Rare Metabolic Diseases
- https://www.sbpdiscovery.org/team/hudson-freeze-phd — Website of Dr. Hudson Freeze, one of the researchers at the forefront of CDGs
- http://www.biken.osaka-u.ac.jp/en/laboratories/detail/22 — Website of Dr. Taroh Kinoshita, one of the world’s foremost experts on the GPI-anchor pathway
- CDG Canada
Helpful Facebook Groups
- CDG Global Alliance –This Facebook group (with almost 1,000 members) connects family members, patients and medical professionals for all CDG subtypes all over the world.
- GPI-anchor CDG Community — This is the Facebook group we created to gather all families dealing with a GPI-anchor disorder. While each specific genetic mutation may have small numbers, there are many similarities among the GPI-anchor disorders and we felt people would be able to benefit from shared experiences.
- Multiple Congenital Anomalies-Hypotonia-Seizures Syndrome Type 2 — This Facebook group connects those diagnosed with a PIGA genetic disorder.