CDG

CDG and Allies and APCDG to present posters about therapeutic research and lay language resources driven by CDG families in collaboration with key stakeholders at European Conference on Rare Diseases (ECDR) 2022!

The CDG & Allies and APCDG announces presentations at the European Conference on Rare Diseases and Orphan Products (2022 ECRD) of results dedicated to the study of the Immunological involvement in Congenital Disorders of Glycosylation (CDG) using a community-centric approach and several posters dedicated to the current works focused to create resources in lay language, and to make information centralized thanks to https://worldcdg.org/, a web based platform co-created with and by CDG families, to families and related stakeholders.
CDG

Call for research to improve the quality of life of people living with rare diseases

The CDG & Allies calls for research based on the needs of people living with rare diseases and their families, as a way to improve the quality of life of people living with Congenital Disorders of Glycosylation (CDG), a group of rare hereditary disorders. This alert comes as part of Rare Disease Day, which was celebrated on February 28.
CDG

Families embark in the mission to advance research to find treatments for rare diseases

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.
Rare Disease Day

CDG CARE and Sanford Burnham Prebys host CDG/NGLY1 Scientific and Family Conference

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”.
Carlota Pascoal

Portuguese develops unprecedented research to assess the quality of life of people with CDG

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.
Associação lança materiais educativos

Association launches educational materials to improve the quality of life of the CDG community

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.”
World Conference CDG

CDG Conference accounting with the presence of more than 400 registered participants

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.
Online Survey

Association launches international study to improve the quality of life of patients

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.
Congenital Disorders of Glycosylation Congress

Congenital Disorders of Glycosylation Congress gathers over 120 international speakers

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.