Annette Bakker is President of the Children’s Tumor Foundation (CTF). With a PhD in biochemistry, Dr. Bakker has leadership experience in both the academic world and pharma/biotech research enterprises in Italy, Belgium, France, and the US. Intrigued by the observation that the path from great basic discoveries to equally great clinical benefit is bumpy and often inefficient, she joined the Children’s Tumor Foundation in order to try to smooth this path for neurofibromatosis (NF), a rare genetic disorder. The team has built worldwide collaborative science networks, an open biobank, a centralized data collection and integration platform, a patient registry, a key opinion leader (KOL) network, a clinic network, and more. Dr. Bakker feels very strongly about involving the patient voice in every initiative since patients are partners rather than victims. She hopes that the new CTF enterprise will not only benefit patients with NF, but may be of value to the larger rare disease community.