Beth Vanstone

Co-Founder at Ontario Rare Action Group

Speaker

Beth Vanstone is a nationally recognized rare disease advocate whose work has transformed access to life-saving treatments for Canadians living with rare diseases. After her daughter, Madi, was diagnosed with Cystic Fibrosis at just eight months old, Beth became a driving force behind policy change, combining relentless determination with a sophisticated understanding of healthcare systems, regulatory frameworks, and government processes. Her leadership and strategic advocacy helped secure access to breakthrough medications such as Kalydeco and Trikafta, fundamentally changing the trajectory of Cystic Fibrosis care in Canada.

With over two decades of experience navigating complex health policy landscapes, Beth has become a trusted voice among patients, clinicians, industry leaders, and policymakers. Recently she joined forces with another “Rare” mom to establish The Ontario Rare Action Group a newly registered non profit. The goal of this group is to unite the rare voices across Ontario to advocate for a much needed Rare Disease Strategy in Ontario. She collaborates closely with national organizations, including the Canadian Organization for Rare Disorders (CORD), and is a prominent contributor to the dialogue on equitable drug access, rare disease strategies, and patient-centered policy reform. Known for her clarity, persistence, and deep commitment to justice in healthcare, Beth continues to champion a future where innovation in medicine is matched by timely, equitable access for all who need it.