Here's a selection of information from patients & professionals to better understand CDG.
Portuguese CDG Assoc.
The APCDG-DMR (Associação Portuguesa CDG e outras Doenças Metabólicas Raras) is a non-profit organization founded by parents providing information and support for a group of disorders known as Congenital Disorders of Glycosylation and for other Rare Metabolic Disease.
The Association is involved in the identification, coordination and organization of various scientific and medical communication activities contributing to the improvement and enhancement of understanding and awareness of CDG Syndrome and related Rare Metabolic Diseases. The Association coordinates activities such as, Conferences and Scientific Cafés in various areas such as the nanotechnology, epidemiology, orphan drugs, etc.
The aim of these activities is to establish a relationship between scientists and society, to contribute to scientific debate and to increase media coverage of different aspects of rare diseases. Furthermore, collaborations with researchers, care professionals and therapists are being developed in order to promote CDG knowledge and awareness and improve the quality of life and outcomes for patients with CDG.