Hugh Hempel is a Rare Dad, Citizen Scientist, and the Executive Director of the N=1 Collaborative. As a rare dad, Hugh facilitated the development of treatment for his identical twins diagnosed with a rare and fatal genetic disease called NP-C (Childhood Alzheimer’s). Hugh immersed himself in science, medicine, and healthcare policy in a valiant yet unsuccessful attempt to save his own children. Now, it is his life’s calling to champion the changes needed to provide treatments for millions of children who are dying yearly from rare diseases. Hugh has extensive experience working with United States federal health agencies. For several years he worked with the FDA's Center for Drug Evaluation and Research (CDER), to ensure that the drug he was championing, Cyclodextrin, was safe and effective to provide to NPC patients worldwide. He also worked extensively with the NIH. The Hempels were active participants in the natural history studies and Cyclodextrin phase I clinical trial design with the NICHD. They also collaborated with NCATs in the development of a high-throughput drug screening process to identify repurposing opportunities. Hugh believes deeply in the importance of “open source” collaboration throughout the healthcare ecosystem and has fought to encourage academia, industry, and government to more openly share data. Through the Addi & Cassi Foundation, the Hempels funded the creation of a genetically identical mouse models. They also participated in a collaboration with the Whitehead Institute in the creation of a stem cell program to create a neuronal model representing the specific genetics of both parents and the twins.