Heidi Bjornson-Pennell is the Director of Patient Networks and Partnerships at the Chan Zuckerberg Initiative (CZI), where she leads efforts to embed patients in research and innovation, ensuring science translates into meaningful real-world impact. As Lead of CZI’s Rare As One Network, Heidi supports nearly 100 patient-led organizations worldwide working to accelerate rare disease research, foster collaboration, and drive the development of treatments and cures.

A graduate of Columbia University, Heidi began her career as a barrister in London, practicing criminal defense, asylum, and human rights law before returning to the United States to continue her legal career as an attorney at Keker, Van Nest & Peters LLP and later as a Deputy State Public Defender for California, representing clients on death row for over a decade. Her path shifted profoundly when her two youngest children were diagnosed with primary ciliary dyskinesia (PCD), a rare genetic disease. This personal experience inspired her to join the PCD Foundation, where she served on the board for eight years and now chairs the PCD Research Scientific Advisory Panel, guiding funding decisions to advance research and discovery.

At CZI, Heidi leads cross-sector initiatives that unite patients, researchers, clinicians, industry, and policymakers to drive innovation and amplify the patient voice across CZI’s Grand Challenges — from building a virtual cell model to advancing understanding of inflammation and the immune system. Heidi speaks internationally across the Americas, Europe, and beyond on the transformative power of patient partnership and patient-driven research in accelerating scientific progress. Her leadership champions support for patient communities, innovation, open science, cross-disease research, and global collaboration as essential to driving progress for the 400 million people worldwide living with a rare disease.

Bjornson-Pennell briefed National Press Foundation fellows in November 2025: Rare Disease Treatment Requires AI, Patient Participation. Check out the Rare Disease Reporting Guide.