Parisa Sanandaji is the Executive Director and Head of Global Patient Advocacy & Policy at Stoke Therapeutics, a biotechnology company pioneering RNA-based medicines to address severe rare diseases by upregulating protein expression.
With over 20 years of experience spanning diverse roles across the biopharmaceutical industry, Parisa has worked extensively at the intersection of drug development, patient advocacy and policy, fostering collaborations with industry thought leaders, researchers, advocates, and regulators. Since joining Stoke in 2022, she has focused on connecting early R&D and clinical teams with rare disease patient advocacy organizations (PAOs) to ensure patient perspectives inform drug development, particularly for therapies like the potentially first disease-modifying treatment for Dravet syndrome.
Parisa has witnessed and contributed to the growing empowerment of PAOs, which are increasingly influential in shaping diagnostic, access, and drug development strategies. Most recently, she has collaborated with PAOs on payer engagement strategies to usher in a new era with advocates as key decision makers on topics ranging from diagnosis to accessing innovative treatments and optimizing complex care coordination pathways. She draws parallels on these efforts to the patient community’s advocacy during the passage of landmark legislation such as the 21st Century Cures Act and regulatory milestones such as the Prescription Drug User Fee Act (PDUFA) negotiation cycles which have led to advancements in patient focused drug development.
Currently, one of her areas of focus is addressing challenges rare disease families face in accessing genetic testing, which is often prohibitively expensive and under-supported by insurers. Parisa emphasizes the critical role of genetic testing, and subsequent analyses of the results, in providing families with a sense of community and enabling timely access to disease-modifying therapies. She advocates for strategic evidence generation and dissemination to policymakers and payers to ensure that the value of innovative therapies and diagnostics are recognized and supported.
Parisa holds an MS in Developmental Biology from NYU and an MSc in Health Policy, Planning & Financing from LSE and LSHTM. She’s previously spoken on innovation and policy, including the Inflation Reduction Act’s impact on the biotechnology sector working on rare disease interventions, and is dedicated to advancing accelerated approval pathways, orphan drug incentives, and access to precision medicines for underserved communities.
