MassBio will host its annual Patient Advocacy Summit on Thursday, September 15, to showcase the best practices and cutting-edge examples of how life sciences companies can more fully incorporate the patient voice into the work they do throughout the drug development cycle. With a theme of “Supporting the Patient from all Angles: For-Profit, Non-Profit, and Government organizations,” this year’s hybrid event will explore the topic through keynote addresses, a panel discussion, and a professional development workshop for patient advocates.
“Being patient driven means so much to everyone at MassBio, from our staff to our members,” says MassBio CEO Joe Boncore. “The Patient Advocacy Summit is one of our most popular events of the year because it brings together the people and organizations passionately working to ensure the patient’s perspective is always present and heard.”
Attendees can look forward to a keynote address from Rich Pezzillo, Executive Director of the New England Hemophilia Association, which assists and advocates for patients with a bleeding disorder across New England. Described as an “A-list” patient advocate, Rich leads the organization’s work to improve the quality of life for persons with bleeding disorders and their families through education, support, and advocacy, including hosting a winter and summer camp and leading the Patients for Prescription Access Coalition (PFPA). Speech and language pathologist Peggy Ellertsen will join the summit as closing keynote speaker. Peggy, who is a past member of the Hearing Loss Association of America Board of Trustees, began developing hearing loss in college, and has made it her life mission to help others who are going the same thing, working closely with communities and businesses to make the world more accessible and enjoyable to people who are hard of hearing.
In-person attendance is available on a first-come, first-served basis, so please register early for this popular event. A livestream will be available for those attending virtually or placed on the waitlist.
Representative Hannah Kane of Shrewsbury, who has been recognized for her work regarding rare disease advocacy including the creation of a state Rare Disease Advisory Council, will join a panel titled, “Industry and Patient Advocacy Partnerships Beyond Clinical Trials,” where panelists will discuss incorporating the patient voice in public policy efforts at the state and federal level to improve patient outcomes. In this interactive and informative panel, attendees will learn how patient organizations and industry can work together in advocating for legislation of mutual benefit, in ensuring that patient perspectives are included in FDA activities and regulations, and how the patient voice is integrated in decision making in industry through patient advisory boards.
“I look forward to the Patient Advocacy Summit every year because no single event reminds me more about why we are all in the life sciences,” explains Kendalle Burlin O’Connell, President & COO, MassBio. “We are excited to host an informative panel, interactive workshop, and inspiring keynotes in person and virtually this year to give members and guests new tools and resources to elevate the patient across government and industry.”
Finally, summit guests will be invited to participate in in a solution finding workshop on taking advocacy beyond drug development and clinical trials. In this interactive workshop, Patient Advocacy leaders and others will talk through case studies of challenging real-world scenarios. Each case study will demonstrate the myriad ways Patient Advocates provide support beyond therapeutics and how to leverage relationships and services with partner organizations: for-profit, nonprofit, government agencies and others.
Award-winning former journalist Mike Nikitas will also offer remarks, and attendees will have ample opportunities to network with other patient advocates during breaks and the closing networking reception. Additional speakers, panelists, and information will be added to the Patient Advocacy Summit on our website in the coming weeks.
Thank you to this year’s corporate sponsors:
- GOLD: Astellas, Takeda Oncology, and ThemoFisher Scientific
- SILVER: Sanofi
- COPPER: Sage Therapeutics and Sunovion