Patient advocacy groups can be of great use to patients, giving them means to network with other patients and providing a direct source of information. In this interview, recorded at the International Conference on Acute Myeloid Leukaemia 2017, by the European School of Hematology (ESH), in Estoril, Portugal, Jane Churpek, MD, of the University of Chicago, Chicago, IL, highlights some of benefits brought about by the formation of a patient advocacy group for patients diagnosed with familial platelet disorder.