In this episode of Voices of Inclusive Research, Dr. Ren speaks with Mary McGowan, President and CEO of the Foundation for Sarcoidosis Research, about the importance of awareness, policy change, and patient-centered solutions in advancing health equity.
Mary shares insights on sarcoidosis, a complex and often misunderstood inflammatory disease that disproportionately impacts communities of color, especially Black women.
As they dive deep into conversation, they explore the importance of initiatives like Champions for Change, which encourage organizations to provide paid time off for clinical trial participation, and emphasize the need for collaboration across community groups, researchers, and industry leaders.
This episode is a reminder that meaningful change happens when we listen to communities, take action on what we hear, and keep patients at the center of every decision.
Must-Hear Insights and Key Moments
- Raising Awareness: Understanding sarcoidosis and why awareness is critical, especially in underserved communities
- Beyond Trust: Recognizing that lack of awareness and not being asked are major barriers to clinical trial participation
- Policy in Action: How community feedback led to FMLA protections for clinical trial participants
- Breaking Barriers: Addressing real-life challenges like job security, finances, and access
- Power of Patient Voice: How listening to communities can drive nationwide change
- Collaboration Matters: Why partnerships between organizations, communities, and industry are essential
- Sustainable Change: The importance of ongoing education, advocacy, and awareness
About Mary
Mary McGowan is the President and CEO of the Foundation for Sarcoidosis Research, the leading international organization dedicated to improving the lives of those living with sarcoidosis. She leads efforts to improve clinical trial access, advance shared decision-making, and accelerate drug development.
Through initiatives like the Ignore No More Campaign, the Coalition to Advance Clinical Trial Engagement, and the FSR Global Sarcoidosis Clinic Alliance, Ms. McGowan is recognized for her strategic and collaborative leadership in advancing impactful, scalable solutions for rare disease patients.
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