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Rare Disease Innovation & Partnering Summit
May 17-19, 2022
Delivered as a Hybrid EventRevere Hotel Boston Common • Boston, MA

Jennifer McNary
Executive Director, Head of Patient Advocacy and Engagement at Fulcrum Therapeutics

Profile

Jenn McNary is a trusted voice in the rare disease community, as a mother, public speaker and fierce advocate. Her work in the rare disease space as a thought leader earned her the Ryan’s Quest Ryan’s Hero award in 2013, and the prestigious 2017 Meyer- Whalley instrument of change award. Formerly as the director of outreach and advocacy at a Massachusetts based non-profit foundation, she was responsible for the organization of the largest FDA advisory committee hearing in history, with over 1000 duchenne advocates, families, clinicians and researchers in attendance. There are currently only three drugs approved for Duchenne, Exondys51, Vyondys53 and Emflaza, though in various roles, Jenn was involved in the approval process for all three. Jenn has unique experience in the drug development field, as a parent of children enrolled in the clinical trials, an advocate engaging with the regulators and as a patient engagement professional in the life sciences.

Currently, Jenn is the Executive Director, Head of Patient Advocacy and Engagement at Fulcrum Therapeutics and consulting in the biotechnology space with an expertise in caregiver/patient engagement. Her other activities include serving as the Founder of One Rare, a non-profit formed to meet the needs of young adults with rare and chronic conditions and raising her children in Massachusetts.

Agenda Sessions

  • Understand the Rare Disease Patient Journey — Actionable Insights from Discovery to Access

    11:15am
  • Reflect on the Impact of COVID-19 on the Rare Disease Community

    11:15am

Speakers at this event