The World CDG Organization, the international patient-led CDG & Allies -PPAIN research network and the Portuguese Association for CDG are happy to announce the opening of TWO NEW research projects: 1. The development of a quality of life tool, and; 2. The assessment of vaccination and/or infection-related coping skills and actions among a rare disease community.

Research projects that empower, make a difference in and strive to improve the quality of life of CDG children and adults

Maurizio Scarpa is the coordinator of the European Reference Network for Hereditary Metabolic Diseases (MetabERN) which has a working group dedicated to CDG.