CDG & Allies alerts to the importance of stimulating research to improve the quality of life of people living with Congenital Disorders of Glycosylation (CDG) and calls for a focus on people-centered research in collaboration with keystakeholders. This alert comes as part of World Day of the Sick on February 11th.
"Nowadays, there is still a lot left to do when it comes to research and development of therapies for Congenital Disorders of Glycosylation (CDG). As a response to this urgent need, in 2016, we launched CDG & Allies," says Vanessa Ferreira, sister of a person living with CDG, co-founder and researcher of CDG & Allies.
CDG & Allies is an international research network based at the Faculty of Science and Technology at the New University of Lisbon, and whose 3 main pillars are research, awareness raising, and capacity building. "Launching CDG & Allies, was like climbing Everest without oxygen or guides. Today we take an active role as partners with professionals, shaping research agendas and leading research projects in areas that families consider a priority, and consequently, researchreflect the needs, experiences and perspectives of CDG families”, explains Vanessa Ferreira.
Rita Francisco, researcher, highlights that: "The uniqueness of this thesis is due to the sustained and continuous involvement of the CDG community - families, physicians and researchers - in the advancement of biomedical knowledge in CDG. The CDG community came together and collaborated closely and together we identified needs, defined priorities, and built solutions. In addition, we generated new biological and clinical knowledge with special emphasis on the immunological involvement of CDG patients".
"Continuing to lead research that increases current knowledge on aspects, such as immunology in CDG, will allow us to develop effective and urgent treatments that are key to a longer and healthier life for people living with CDG and their families," concludes Vanessa Ferreira.
CDG & Allies will present the results of the study "Novel insights into biological and clinical research on Congenital Disorders of Glycosylation through a people-centric approach", on February 16th, in an online format, aiming to share and discuss scientific knowledge in order to advance science to improve the quality of life of people living with CDG.
CDG are a group of more than 150 inherited diseases that affect glycosylation, a process by which all human cells accumulate long-chain 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.