The Rare Disease and Orphan Drugs Journal has published a new article in which six different collaborating patient advocates from around the globe engage in pushing newborn screening (NBS) forward and raising awareness of rare diseases. In this collaboration between the International Rare Diseases Research Consortium (IRDiRC) and the patient advocacy constituent committee (PACC), the authors describe the different approaches each organisation takes towards advocacy, and draw conclusions on best practices for public engagement in the promotion of NBS programmes.
