Lisbon, 22 November 2022 – Today, CDG and Allies is proud to share that new easy-to-read, lay language content and resources addressing relevant CDG topics is now available! The new webpages will help families to get information regarding what is CDG, diagnosis, care, treatment, and support from patient groups, advocates, and professionals.
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).
“This project involved almost 40 people, that dedicated many hours. For example, there are webpages whose content took 150 hours to be created, 80 hours to revise, and another 70 hours to upload. But we are very grateful to all motivated people that devoted time to make it possible.”, continued Vanessa.
The team coordinated by Vanessa Ferreira, was composed of researchers from the CDG and Allies International community-centric network, reference CDG experts and almost 30 volunteers from the Sci and Tech Volunteer Program 2020 from NOVA School of Science and Technology (FCT NOVA). Altogether, have been involved since the end of 2020 in creating non-technical language content about CDG, research being conducted, and other topics of interest to encourage active use of this platform. On some occasions, the curation of content from reliable sources was considered transferable for CDG educational purposes.
“Education about CDG is vital. The internet can be a great resource. Although, access to easy-to-read, lay language content and resources in the field of CDG is limited and hard to find. Now we hope that this empowering, people-centric platform can help many families and professionals” said Rosália Félix (mother to a person living with CDG and co-founder of Portuguese Association for CDG).
CDG are a group of over 160 inherited diseases that affect glycosylation, a process by which all human cells accumulate long-chain of sugars that are attached to proteins or lipids (fats), essential for many biological functions. These diseases are highly disabling, with a high pediatric mortality rate and a significant negative impact on the quality of life of patients and families.
About CDG & Allies
CDG & Allies are a family-driven international research network dedicated to CDG and related diseases, based at FCT, NOVA University. For more information, please consult: CDG & Allies
About the World Organization for Congenital Disorders of Glycosylation
The World Organization for Congenital Disorders of Glycosylation (WCDGO) is the unified voice of people living with CDG. It aims to transform the world's understanding of CDG and advocate for those living with CDG. WCDGO has a strong, common voice with governments, researchers, clinicians and industry to promote research, diagnosis, treatment and services for CDG. WCDGO is led and operated on a volunteer basis by the CDG & Allies, and CDG Patient Groups. For more information, please consult: WorldCGD.org
The Portuguese Association for Congenital Disorders of Glycosylation and other Rare Metabolic Diseases (APCDG) is a non-profit organization aimed at promoting innovative research that makes a difference in the lives of patients and their families. The actions of this association are carried out nationally and internationally. For more information, consult: APCDG