#CDGAwareness #CDGNews #CDGcommunity

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).

About 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  

About APCDG 

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

The Portuguese Association for Congenital Disorders of Glycosylation and Other Rare Metabolic Diseases (APCDG), together with the CDG & Allies Professionals and Patients Associations International Research Network (CDG & Allies - PPAIN), launched a set of educational materials with the aim of answering the most frequent questions asked by people living with Congenital Disorders of Glycosylation (CDG).

According to Vanessa Ferreira, founder of APCDG and co-founder and researcher of the research network CDG & Allies – PPAIN: “CDG clinical trials are complex and not accessible to the general public, which is why we consider extremely important to clarify some concepts.”

And she adds: “Access to health information makes people more autonomous in relation to their health and to the health of those around them. In this sense, we produced a set of educational materials, such as videos and infographics, in order to simplify the scientific language of the CDG, which is mostly complex to decode.”

Educational materials are available here: https://worldcdg.org/resources

Also with the aim of improving the quality of life of those living with CDG and identifying their main needs, the second phase of the international study “CDG Experiences over time from families and professionals views”, aimed at CDG families and professionals, is underway. Only through these different perspectives is it possible to offer an answer adapted to the needs of all those living with these diseases.

Learn more about the study: https://worldcdg.org/research-cdg-journey-mapping/survey-2-cdg-experiences-over-time-families-and-professionals-views

CDG are a group of 150 hereditary disorders that affect glycosylation, a process by which all human cells store long-chain sugars that are linked to proteins or lipids (fats). This is an essential process for several biological functions. These disorders are highly incapacitating, with an elevated pediatric mortality rate and with a very negative impact on patients and families’ quality of life. CDG are a family of rare disorders, being PMM2-CDG the most common type, with an estimated incidence of 1 in each 20 thousand people.

About APCDG

The Portuguese Association for Congenital Disorders of Glycosylation and Other Rare Metabolic Diseases (APCDG) is a non-profit organization dedicated to 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: http://www.apcdg.com/

About WCDGO

The World CDG Organization is the unified voice of people living with CDG. The goal is to transform the world's understanding of the CDG and advocate for those living with the CDG. The WCDGO has a strong, common voice with governments, researchers, clinicians and industry to advance research, diagnosis, treatment and services for CDG. WCDGO is led and operated by the CDG & Allies Professionals and Patient Associations International Research Network (CDG & Allies PPAIN).

About CDG & Allies PPAIN

CDG & Allies PPAIN is an international research network dedicated to the group of CDG and related diseases, based at the NOVA School of Science and Technology. For more information, consult: https://www.researchcdg.com/.