Portuguese CDG Association
Here's a selection of information from patients & professionals to better understand Congenital Disorders of Glycosylation.
The Portuguese Association for CDG and other Rare Metabolic Diseases (APCDG-DMR) vision is developed from the belief of its founder that to achieve the hopes of patients and families who suffer from rare diseases, key stakeholders need:
To include patients and their representatives as full partners during the overall research and clinical program;
To be patient-centric in their thinking.
This is a very promising and innovative approach whereby all parties combine their strength and expertise in a collaborative, dynamic and shared spirit. That is the key driver to achieving transformative, potentially life-saving therapies that can revolutionize the clinical treatment of a disease and offer new life to patients and concerned families.