She has been involved in management of CCHS patients since 1995. Patients come from all areas of France and abroad for her CCHS expertise. Dr. Trang serves as the coordinator of the French National Centre of Reference for CCHS since 2004 (National Plan for Rare Diseases) and is one of the founders and actual coordinator of the European CCHS consortium (since 2005). She is a core member of the French CCHS group which has contributed key advances in knowledge in CCHS including the identification of PHOX2B as the CCHS-causing gene, description of CCHS cardiac and digestive phenotypes, phenotype/genotype correlations, and implementation and coordination of a French CCHS registry.