On November 15, 2024, the MassBio Patient Advocacy Summit will unite passionate advocates, industry leaders, and patients to explore the crucial role that patient advocacy plays in drug development. This year’s theme is storytelling, emphasizing the transformative power of personal narratives in shaping healthcare. If you’re committed to patient advocacy or eager to learn how to make a meaningful impact, this event is a must-attend.
The Crucial Role of Patient Advocacy
In the intricate landscape of drug development, patient advocates serve as vital connectors, ensuring that patient voices influence every stage of the process. They engage with families, gather insights, and advocate for policies that prioritize patient needs. The MassBio Patient Advocacy Summit offers an invaluable opportunity to learn how advocates can drive change.
What to Expect at the Summit
The agenda is filled with inspiring talks and engaging discussions, featuring leaders who are at the forefront of patient advocacy. Here’s a snapshot of what attendees can look forward to:
- Keynote Address by Wendy Poage (Servier Pharmaceuticals): Kicking off the event, Wendy Poage, Head of Patient Advocacy at Servier, will discuss the company’s commitment to patient-centric care. Servier has established itself as a leader in engaging with patients and caregivers, and Wendy will share insights on how they amplify patient perspectives through their Patient Expert Council. This session will illuminate the importance of incorporating patient feedback into drug development and healthcare initiatives.
- Panel Discussion: From Parent Advocates to Clinical Trial Funders: Join Joe and Courtney Dion, founders of the Dion Foundation for Children with Rare Disease, as they share their journey of advocacy following the diagnosis of their children with Limb Girdle Muscular Dystrophy (LGMD). They will discuss the challenges and successes in starting a patient advocacy foundation, raising funds, and collaborating internationally to expand clinical trials for innovative therapies. They will be joined by Stéphane Degove, co-founder and CEO of Atamyo Therapeutics, the French biotech partnering with the Massachusetts-based non-profit to expand a clinical trial into the U.S.
- Possible Talk: Patient Advocacy Briefing from Washington: Michele Oshman, Head of Patient Advocacy at BIO, will provide a timely update on key policies impacting patients, including the ORPHAN Cures Act and the Inflation Reduction Act. This session will equip advocates with the knowledge needed to navigate the evolving policy landscape and effectively advocate for patient access to groundbreaking therapies.
- Panel Discussion: Elevating Black Voices to Achieve Better Health Outcomes: This important discussion will focus on the American Cancer Society’s VOICES of Black Women study, which aims to improve health outcomes by enrolling over 100,000 participants to gather vital health data specific to Black women. Led by Jessica Russo, Dr. Erica Warner, and advocate Jenina Tyler, this session will highlight the significance of diversity in health research and the impact of targeted advocacy.
Putting Knowledge into Practice
Attending the MassBio Patient Advocacy Summit is just the beginning. Here are some actionable steps to put what you learn into practice:
- Share Your Story: Use storytelling techniques to share your experiences and those of others in your community. Whether on social media or at local events, amplifying these narratives can foster awareness and understanding.
- Engage with Policymakers: Armed with insights from the summit, reach out to your elected officials. Share how policies affect patients in your area and advocate for changes that improve healthcare access.
- Network and Collaborate: Connect with fellow attendees to exchange ideas and form partnerships that enhance your advocacy efforts. Collaboration can amplify your impact and broaden your reach.
- Stay Informed: Commit to ongoing education about developments in patient advocacy and drug development to remain a powerful voice in your community.
Final Thoughts
“We are so excited to share our story and our #patientadvocacy journey at this year’s MassBio Patient Advocacy Summit,” writes Courtney Dion on LinkedIn. “We will be sharing how important advocacy is within the rare disease patient community.”
The MassBio 2024 Patient Advocacy Summit is a unique opportunity to learn from leading voices, share your own experiences, and empower yourself to drive meaningful change. Whether you’re a seasoned advocate or new to the field, this summit will inspire you to elevate your voice for patients everywhere. Join us on November 15, and let’s ensure that every patient story is heard loud and clear!