Annette, a PhD in Biochemistry, has leadership experience in both the academic and pharma/biotech research enterprise in Italy, Belgium, France, and the USA. 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 (CTF) in order to try to smooth this path for neurofibromatosis, 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 etc. Annette feels very strongly about the unique niche role of disease foundation in the R&D ecosystem and involving the patient voice in every initiative. CTF sees patients as 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.