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

Today's CDG: A Community of HOPE brings us Dr Stepahnie Grunewald - THE CDG Medical Expert in the United Kingdom.

Today our interview is with the researcher and patients advocate - Carlota Pascoal!