A lawyer by training, Heidi dedicated her career for over a decade to criminal justice and human rights work, practicing as a barrister in England and a litigator and public defender in the U.S. She has served on numerous boards in the fields of health, children’s rights, civil liberties, and the arts. But when Heidi's two youngest children were diagnosed as toddlers with a rare, progressive genetic disorder - primary ciliary dyskinesia (PCD), Heidi shifted her efforts and joined the board of the PCD Foundation where she served for over 8 years. A strong believer in the power of patients and an advocate for research, Heidi was moved by the ambitious goal of the CZI to “cure, prevent or manage all diseases in our children's lifetime." She now passionately champions and supports the voice of patients in driving progress against disease in her work on the Rare As One Project.
Patients and their caregivers - particularly in the case of patients who with serious or life-threatening illnesses - are tired of waiting on the sidelines for research to come to them (for example, to find them for clinical trials or to address questions of importance to patients). Increasingly patients are seizing greater opportunities to have access to their health information (including genomic/genetic data and clinical data from electronic medical records, including images) to contribute this data directly to research initiatives that they trust and that are addressing questions of importance to them (either because they could benefit individually or the research is focused on questions the patient believes are important). This panel will showcase existing initiatives that are putting patients (and patient groups) more in the driver’s seat with respect to precision medicine.