Preparations for the largest CDG community-led conference kick off with a call for help to build the agenda you wish!
You can now select the topics for the sessions of the upcoming 6th World Conference on CDG (Lisbon, 21-23 July 2023), HERE
Lisbon, 30 September 2022 - The World Conference on CDG will be hosted on 21-23 July 2023, in Lisbon, Portugal. This event fosters and strengthens community-centric programs that empower all stakeholders to promote and speed up CDG drug development. The Conference aspires to build a coordinated research and drug development agenda strategy that will help CDG families and professionals accomplish meaningful goals.
Recent research by CDG and Allies revealed that CDG families face disparities in diagnosis, care, access to information, and therapies due to funding, ethical, and legislative difficulties. Overall findings suggest establishing and strengthening a community-centric strategy for CDG drug development that supports active engagement from all stakeholders.
“The development of research and medicines in CDG needs a collaborative, coordinated, and comprehensive framework, that can only be done with all stakeholders in one room. This is the only way to reduce existing inequalities and ultimately will improve the health outcomes of people living with CDG”, said Vanessa Ferreira (CDG and Allies researcher and co-founder, president to APCDG, and sister to a person living with CDG).
Currently, EURORDIS and NORD are leading policy efforts to ensure rare diseases like CDG aren't overlooked. EURORDIS launched Europe's Action Plan for Rare Diseases a new European strategy for rare diseases that sets overarching objectives, priorities, and milestones and connects areas like rare disease research and innovation, national health system effectiveness and efficiency, cross-border cooperation, and patients' human rights.
“If we are united and coordinated as a community, we certainly can benefit from the outcomes of such an action plan for Rare Diseases” concluded Paula Videira (CDG and Allies researcher and co-founder).
Learn more about the challenges and potential solutions faced by the CDG community, at in our section dedicated to share articles, HERE
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: ResearchCDG
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: WorldCDG.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