Several recent publications from CDG and Allies show that finding accurate and reliable information about CDG among the millions of online sources is a difficult task for almost everyone.
“In a heavy technology society, the internet provides access to information in a way unimaginable 50 years ago. Creating and ensuring access to information is a priority for CDG and Allies. Therefore, https://worldcdg.org/ centralizes access to information and improves communication around CDG, helping families to have a proactive attitude towards healthcare decision-making and research participation“ said Vanessa Ferreira (sibling to a person living with CDG and researcher and co-founder at CDG and Allies and Portuguese Association for CDG).