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.

CDG CARE and Sanford Burnham Prebys are hosting the CDG/NGLY1 Scientific and Family Conference, which will take place between February 25 and 27, 2022, in San Diego, California, and will focus on "CDG Models and Therapy”.

CDG & Allies - Professionals and Patient Associations International Research Network (CDG & Allies - PPAIN) is developing an unprecedented project worldwide, which aims to assess the quality of life of people living with congenital disorders of glycosylation (CDG). The investigation is led by the network researcher Carlota Pascoal.

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.”

The Portuguese Association of Congenital Disorders of Glycosylation and Other Rare Metabolic Diseases (APCDG), together with the CDG & Allies Professionals and Patient Associations International Research Network (CDG & Allies - PPAIN) are promoting the 5th World Conference on Congenital Disorders of Glycosylation (CDG), in a digital format from May 13th to 16th, next week. This event is considered the largest event on CDG worldwide, where currently more than 400 participants have registered, including families, professionals and representatives from the pharmaceutical industry.

The Portuguese Association for Congenital Disorders of Glycosylation and Other Rare Metabolic Diseases (APCDG), together with a CDG & Allies Professionals and Patient Associations International Research Network (CDG & Allies - PPAIN), launches a scientific, pioneering and international study entitled “CDG Journey Mapping”, which intends to know the journey of people living with Congenital Disorders of Glycosylation (CDG), and their families, and ultimately aims to improve CDG quality of life.

The APCDG-DMR in association with CDG & Allies Professionals and CDG & Allies - PPAIN will organize from 13 to 16 of may 2021 the  5.th World Conference on Congenital Disorders of Glycosylation (CDG), for the first time, on an hybrid formula: virtual and face-to-face. The initiative will count with the participation of about 120 international speakers from all around the globe.

Sandra Brasil, researcher from the CDG & Allies PPAIN Research Network, is leading a global research, aiming at compiling information related to the use of Artificial Intelligence (AI) tools in Rare Diseases to improve disease diagnosis, patient characterization, disease classification and the search of new therapies, ultimately improving patient and family members’ lives.

This edition of CDG: A Community of HOPE features Prof Paula Videira