Mackenzie Abramson, MPH, BCPA | Patient Advocate & Founder
Patient Advocate

As a Board-Certified Patient Advocate, public health professional, and advocacy and engagement strategist, I am driven by a deeply rooted personal journey and a commitment to amplifying the voices of patients, caregivers, and advocacy communities. My diagnostic odyssey began in childhood and evolved into a professional mission after navigating multiple rare, autoimmune, and complex health conditions in early adulthood, followed by early peri-menopause. I have transformed my lived experience into a career dedicated to improving how healthcare systems, research, and industry engage with the people they serve. My advocacy impact extends internationally. I am an active leader and collaborator across the rare disease and patient advocacy ecosystem, regularly speaking at national and global conferences, including Patients as Partners, NIH Rare Disease Day events, and industry and policy forums. I was nominated for the 2025 Women in Technology Award and was nominated for and won Advocate of the Year at the 2025 Healthcare Advocate Summit, recognizing my leadership and measurable impact in advancing patient-centered innovation. In addition to conference speaking, I have shared my expertise and lived experience across multiple podcasts, including "I Don't Know How You Do It," "The Tox Drop," and "On One Condition," where I discuss patient leadership, healthcare system navigation, and the intersection of lived experience and research. I am the founder of Tenacious Advocacy Consulting Team (TACT), a patient-centered strategy and communications consultancy focused on rare disease, chronic illness, mental health, and women's health. Through TACT, I partner to design and execute patient-informed strategies that are actionable, measurable, and aligned with business and development goals. Drawing on my experience across research programs, communications, public health programming, and patient operations, I specialize in bridging the gap between patient communities and industry stakeholders - ensuring patient insights directly shape education, research, development, and care delivery. I am deeply committed to transforming how patient voices influence healthcare decision-making across the full development lifecycle. Beyond professional credentials, what distinguishes my work is the perspective I bring as someone who has personally navigated diagnostic uncertainty, clinical research, and systemic barriers to care. This lived experience fuels the urgency, empathy, and strategic clarity I bring to leadership and has helped me build trusted relationships across patient communities, advocacy organizations, industry partners, and research stakeholders. By combining lived experience with public health expertise and strategic execution, I work to ensure patient engagement is not only inclusive and respectful, but also operationalized, measurable, and capable of driving real change in healthcare and research systems.

Appearances:

Day 2 - World Orphan Drug Congress USA 2026 @ 14:40

Ensuring Clinical Development Success: Engaging Patient Advocacy Groups Early and Often

In rare disease drug development, patient advocacy groups are not a “nice to have”—they are essential partners in building feasible, patient-centered, and successful clinical programs. Yet many sponsors still engage advocacy organizations too late, limiting their ability to meaningfully influence study design, recruitment, and long-term program success.

This session examines how biopharma companies can strategically engage patient advocacy groups early and consistently across the clinical development lifecycle to de-risk trials and improve outcomes. Featuring perspectives from industry leaders and patient advocates, the discussion will highlight practical approaches, real-world examples, and lessons learned from rare disease programs where advocacy engagement directly shaped trial design, enrollment strategies, and patient experience.

Objectives:

Embed patient advocacy engagement into early clinical development planning, not just late-stage execution
Identify critical points in rare disease development where advocacy input can improve trial feasibility and patient participation.
Build sustainable, compliant partnerships with advocacy groups that extend beyond a single trial
Avoid common missteps that limit the impact of patient advocacy collaboration in rare disease programs

Moderator: Maurizio Mazzi, Senior Associate Director, Patient Advocacy & Professional Relations, Böhringer Ingelheim