Patient Advocacy Summit 2020

November 12, 2020 10:30 AM - 3:00 PM

Online Conference, Link will be sent in advance of the event.

MassBio's Patient Advocacy Summit brings together the patient advocacy community to showcase best practices and cutting-edge examples of how life sciences companies can more fully incorporate the patient voice into the work they do—not just approaching regulatory applications or at commercialization, but throughout the drug development cycle.

The program includes panel discussions, case study presentations(spotlighting industry/patient partnerships), and an inspirational keynote address.

See sponsorship opportunities here.

NOTE: MassBio makes every effort to accommodate our entire community at each of our events. Please let us know at least 3 days in advance of the event if you require special accommodations, such as captioning.

Session Title Start Time End Time
Platform Open for Networking
11/12/2020 10:30 AM 11/12/2020 11:00 AM
11/12/2020 11:00 AM 11/12/2020 11:05 AM
Possible Talk®: Changing the Game - Powering Rare Disease Research Through Sports
Uplifting Athletes Executive Director Rob Long will discuss how we can reimagine the way we fund and support rare disease research by using lessons learned in sports. He will emphasize the importance of collaboration to accomplish our research goals more efficiently.
11/12/2020 11:05 AM 11/12/2020 11:20 AM
Panel: Perspectives from the Front Lines of Patient Advocacy
Every person in the world now knows what it’s like to live with an unmet medical need, as COVID-19 continues to wreak havoc on human health and the world’s economy. This panel will gather diverse voices from across the industry to discuss how the pandemic has affected the patient advocacy community. Experts will draw lessons from the collaborative approach to addressing the pandemic and how this can be applied to future drug discovery and patient advocacy efforts.
11/12/2020 11:20 AM 11/12/2020 11:50 AM
Possible Talk: Improving research access: Guidance from patients and sites
During this talk, Roz will review compelling insights from research with patients and physicians from different racially and ethnically diverse groups on barriers to trial participation. She will also explore feedback as to how research access and the trial experience can be improved and discuss practical methods for addressing these challenges.
11/12/2020 11:50 AM 11/12/2020 12:05 PM
Lunch Workshop: A Stakeholder-Driven Approach to Patient Advocacy
In this interactive workshop, we’ll explore how a group of stakeholders within the Duchenne muscular dystrophy (DMD) community approaches its work and what we can learn from their successes and failures to apply to other disease areas. We’ll hear from an industry CEO, a patient, a patient advocate, and a researcher. We will then split into smaller groups to discuss before coming back together to report our findings.
11/12/2020 12:05 PM 11/12/2020 1:30 PM
Possible Talk: Engaging the Post-Millennial Generation: Pointers from a Gen Z Patient Advocate
Taylor Kane, rare disease advocate and founder and executive director of an international nonprofit organization called Remember the Girls, which supports female carriers of rare x-linked disorders, will share her perspective on how pharma and the life sciences can engage Gen Z as future patients, customers, clinical trials participants, and employees.
11/12/2020 1:30 PM 11/12/2020 1:45 PM
Networking Break
11/12/2020 1:45 PM 11/12/2020 2:00 PM
Fireside Chat: Science as the Social Justice Issue of our Time and the Role of Patient Advocacy
Patient advocates can be a critical part of the solution to addressing inequality and injustice – both in how we build teams, how we think about suppliers, and how we approach developing and testing therapies. In this fireside chat, Dr. Michelle McMurry Heath of BIO and Liz Lewis of Takeda will explore this concept, and ask tough questions around how to build trust with communities of color to ensure representation in clinical trials, how to create successful coalitions of patient advocates to drive change in our ecosystem, and more.
11/12/2020 2:00 PM 11/12/2020 2:30 PM
Closing Comments
11/12/2020 2:30 PM 11/12/2020 2:35 PM
Afternoon Coffee Break Networking
11/12/2020 2:35 PM 11/12/2020 3:00 PM

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