Jennifer McNary

Patient Advocate Beauhawks Foundation

Jenn McNary is a trusted voice in the Duchenne community, as a mother, public speaker and fierce advocate. Her work in the Duchenne space as a thought leader earned her the Ryan’s Quest Ryan’s Hero award in 2013, a nomination for the Global Genes Champion of Hope award in 2014, and the prestigious 2017 Meyer- Whalley instrument of change award. Formerly as the director of outreach and advocacy at Kingston MA based Jett 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 two drugs approved for Duchenne, Exondys51 and Emflaza, though in various roles, Jenn was involved in the approval process for both. 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 consultant helping to develop programing for patients. Currently, Jenn is consulting in the biotechnology space with an expertise in caregiver/patient engagement, including bringing the patient voice to drug development and solving barriers to access. Her other activities include serving on the board of the Beauhawks, a local non-profit foundation dedicated to funding Duchenne research, participating in and attending conferences and workshops related to patient voice and raising her four children on the south shore of Massachusetts.

Theme: The Patient Comes First

4:30 PM Keynote Conversation | Best Practices in For Industry Working with Patient Advocacy Organizations….The Do’s and Don’ts of Successful Collaboration

Providing patients with the best care possible requires a direct line to those in your organization who have access to information that matters most to patients and their caregivers. Patient advocacy groups are designed to help brands do right by their patients and so, they must and should have a seat at the table when exploring ways to continue to provide value to patients. This panel discussion will look at ways that marketing leaders can leverage their patient advocacy teams to:

Develop tailored educational resources and messages – especially around specialty and rare disease states.
Create methods and structures for patient feedback, helping companies improve their responsiveness to patient concerns.
Reduce friction and provide practical suggestions for DTC platform creation and deployment

Check out the incredible speaker line-up to see who will be joining Jennifer.

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