Speakers

Mackenzie Abramson is a dedicated advocate, driven by her personal journey and commitment to amplifying voices of patients, caregivers, and advocacy groups. Diagnosed in her mid-20’s with a rare disease, Mackenzie pursued advanced education to raise awareness for public health initiatives and rare diseases. Her advocacy efforts have reached an international scale, involving active participation and speaking with organizations such as Patients as Partners, Global Genes, The Everylife Foundation for Rare Disease and Congress, NIH Rare Disease Day, and more.

Mackenzie's work at Tenacious Advocacy Consulting Team focuses on rare and chronic diseases, mental health, and women’s health patients while partnering with the healthcare, pharmaceutical, and biotech industries to create meaningful change. Drawing on her experience in research, communications, public health programming, and patient operations, Mackenzie specializes in bridging the gap between patient communities and industry stakeholders, ensuring that patient needs and insights are at the forefront of research, development, and care initiatives.

Mackenzie is committed to empowering patients, transforming the way their voices shape the future of healthcare, and enhancing patient engagement throughout the development lifecycle. By sharing her story and insights, she hopes to inspire others to navigate their healthcare challenges with tenacity and resilience.

Adrelia Allen, PharmD, is a 22-year veteran of the pharmaceutical industry working in sales and clinical research at Merck. She has held positions of increasing experience as a Clinical Research Associate, Clinical Trial Project Manager, and Clinical Research Manager (CRM). She is currently the Executive Director of Clinical Trial Patient Diversity, where she is responsible for the strategy and execution of activities for the diverse representation of patients in clinical trials. Dr Allen has a Doctor of Pharmacy degree from Florida A&M University College of Pharmacy.

Behtash Bahador is the Senior Director of Community Engagement & Partnerships at the non-profit organization CISCRP, and holds a Master of Science in Health Communication from the Tufts University School of Medicine. Since 2014, he has collaborated with a range of stakeholder groups to establish and implement patient- and public-centric initiatives across the life-cycle of drug and treatment development. This has included supporting the development of regulatory and cross-disciplinary best practice guidelines, operationalizing key elements of evidence-based public health programing into research engagement activities, and always keeping the needs of patients, participants and the public at the forefront of his work.

Paris Barnes, MS, is a senior training specialist with the PATIENTS Program in the Department of Practice, Sciences, and Health Outcomes Research (P-SHOR) at the University of Maryland School of Pharmacy.

Paris holds a Bachelor of Science in Marketing from West Virginia University’s School of Business and Economics and a Master of Science in Medical Cannabis Science and Therapeutics from the University of Maryland School of Pharmacy.

Throughout her career, she has played a key role in facilitating the Affordable Care Act in Maryland, developed statewide data visualizations, and created impactful advertising campaigns. She has also presented nationally on medical cannabis research, served as the Community Liaison for The Eagle Center in Westminster, MD, and volunteered as a grant writer for multiple churches across Maryland.

As a Senior Training Specialist at UMB, Paris remains committed to amplifying the voices of underserved populations. She also plans to continue her research and advocacy efforts to advance the legitimacy and acceptance of medical cannabis.

Lionel Bascles, PhD, was up to very recently the Senior Vice President and Global Head of Clinical Sciences & Operations at Sanofi. In this role, he was leading a global team of experts contributing to the clinical development of Sanofi Pharma portfolio. Lionel took a new role as of Jan 1st this year as SVP, Head of eDevelopment. This move highlights both Lionel & Sanofi willingness to transform the clinical development paradigm, leveraging AI and digital at scale. The purpose is not digital technology per se. This is about enriching the company pipeline with more promising innovative therapies that can be delivered faster to the patients. It implies keeping human at the center : patients, healthcare providers and industry teams. Lionel sits at the board of TransCelerate consortium. He is also the sponsor of the Sanofi Pride+ sponsor.

Lionel holds a PhD in Biochemistry and Molecular Biology, as well as a master's degree in Biochemistry from University Bordeaux II

Janella Beltran is a Patient Recruitment and Engagement Lead within Alexion Global Patient Experience. Her key focus is on embedding the patient voice in rare disease clinical trials by implementing patient‑centric recruitment strategies and leading structured early patient engagement approaches to assess and reduce protocol burden. Previously, she worked across digital engagement and omnichannel strategy, bridging global and local teams to enhance healthcare stakeholder experience.

Ruma Bhagat, MD, MPH is a physician and public health leader with over 20 years of experience in the pharmaceutical industry. She is a seasoned clinical research professional and currently serves as Executive Director, Head of Strategy in the Population Science team at Genentech, a member of the Roche Group. Throughout her career, Ruma has held diverse roles in Clinical Science, Clinical Operations, and Process Excellence, building a strong foundation in the drug development lifecycle. She leads cross-functional initiatives aimed at advancing health equity and promoting inclusive research by broadening the scientific representation of historically understudied patient populations in clinical trials.

An intrapreneur at heart, Ruma is passionate about driving organizational change and fostering innovation in how research is conducted. She is a recognized thought leader and advocate for inclusivity in clinical research, often emphasizing that “research without inclusiveness is not research.” Her work is rooted in the belief that equitable representation in clinical trials is essential to reducing global healthcare disparities and ensuring timely access to treatments for all patients.

Stacey Bledsoe, RN, MSN joined Gilead Sciences in July 2023 as the new Head of Global Clinical Trial Diversity and Inclusion. Stacey will be responsible for leading the effort to increase the diversity of Gilead’s clinical trials across the portfolio while bolstering Gilead’s stance to understand how treatments affect all the populations. Stacey has over 20 years of experience in the pharmaceutical industry across multiple disciplines including Research & Development, Global Health Outcomes, Medical and Six Sigma.

Prior to joining Gilead Stacey spent over 20 years at Eli Lilly & Co where she had a demonstrated success in Six Sigma methodology, Health Outcomes research, medical information, and the hospital payer environment. She recently led Lilly’s diversity and trials initiatives across the portfolio through partnerships and internal and external collaboration, earning the company a rating of Gold. She has shared her enthusiasm and passion for driving the industry’s path toward more diverse clinical trial access and inclusion by engaging in national boards, speaking at multiple conferences, interviews, and publications. She also created and built the Lilly Global Medical Outreach Program, which used medical professional working at Lilly to provide medical services to underserved communities in countries such as Africa, Greece, and South America.

Stacey’s passion for patients and emphasis on serving the most vulnerable began before she entered the pharmaceutical industry. She held a Registered Nurse role on the Level III Newborn Intensive Care Unit at Riley Hospital for Children. Stacey earned her Bachelor and Master of Science of Science in Nursing from Indiana University. Stacey is driven by a goal to influence and ensure all patients have the same access to clinical research and life changing medications that will ultimately improve their lives. Stacey resides in Indianapolis, Indiana with her husband of 22 years, three daughters with one at her alma mater Indiana University, and Yorkie, Sam.

Vanessa Boulanger is a seasoned leader with over 15 years of experience in public health, behavioral science, and rare diseases. As Director of Patient Experience & Engagement at Boehringer Ingelheim, she helps ensure that patient perspectives are included and valued throughout all phases of the clinical development lifecycle. Across roles in academia, non-profit, and now industry, Vanessa has led cross-stakeholder initiatives to advance Patient-Focused Drug Development, designed real-world studies to understand patient experience, and contributed to strategic initiatives and new approaches to measurement.

Tiffany Bratts has over 19 years of experience in the pharmaceutical industry, spanning multiple disciplines across Research & Development. She serves as the Director of Clinical Patient Engagement and Inclusion at Gilead Sciences, where she leads strategic initiatives to embed patient voice into clinical trial design and improve diversity in research. Her mission is to guide trial planning and operational strategies to ensure that every patient has the opportunity to engage in research capable of transforming lives.

Beth Brooks is Head, Patient Insights and Behavioral Sciences (PIBS), within the Patient-Informed Development and Health Value Translation team at Sanofi.

The PIBS team generates insights about patient populations of interest to the R&D organization. Among other things, the team uses this information to establish diversity and inclusion recruitment objectives for studies in the United States. Based on these insights and additional findings, the team uses behavioral science principles to develop tools to address recruitment and retention challenges that some patient populations may present in clinical trials.

As SVP, Strategy and Value at Jumo Health, Mike Burton is responsible for developing strategic, insight-driven, and behaviorally grounded proposals, identifying quantitative value that can be driven from the Jumo Health solutions as well as ensuring value realization. Mr Burton spent the last 12 years at Veeva and Tendo where he built value engineering into a trusted service for hundreds of customers plus go to market strategy and CRO partnership positions. Previously, he spent 15 years in operational clinical trial roles across CROs and large pharma.

Cherika Carr is a Site Engagement Lead at AstraZeneca and a results‑driven Clinical Research Professional with 15 years of experience spanning oncology and multiple therapeutic areas. She brings proven expertise in clinical operations, site management, CRA mentorship, and regulatory compliance, developed across CROs and pharmaceutical/biotech environments. Cherika excels at leading cross‑functional clinical teams, fostering high‑performing site partnerships, and optimizing site performance to drive operational efficiencies and high‑quality trial execution. Her approach integrates data‑informed decision making with proactive risk management, ensuring timelines are met, budgets are protected, and patient safety and data integrity remain paramount.

In her current role, she advances site strategy and engagement frameworks that accelerate study start‑up, enhance enrollment, and strengthen investigator and coordinator experience. A committed mentor, Cherika cultivates CRA capability through structured coaching and best‑practice sharing, elevating consistency, and compliance across study portfolios.

Cherika holds a Master of Science in Clinical Research and Product Development and is a Certified Clinical Research Associate (CCRA). She is passionate about building collaborative ecosystems that translate scientific innovation into measurable patient impact, and she advocates for continuous improvement to streamline trial delivery and expand access to cutting‑edge therapies

Stephanie Christopher is a Patient Engagement Lead at Pfizer, where she supports clinical research teams to bring patient perspectives into the design and implementation of clinical trials and recruitment strategies.

Prior to Pfizer, Stephanie was the Associate Director of Research Programs at the National Organization for Rare Disorders (NORD), where she directed the IAMRARE™ patient-powered registry program, which allows patients and organizations to inform and shape medical research for rare diseases by launching high-quality, customized registries to collect the data needed to define the natural progression of their disease. In previous roles, Stephanie helped advance real- world evidence research at one of the largest healthcare systems in the western US, helped develop tools to advance patient input in the regulatory review of new medical technologies and was part of a research team seeking to improve the quality of communication between physicians and patients.

Stephanie received her Bachelor of Arts in Communication from Pacific Lutheran University (Tacoma, WA) and Master of Arts in Science, Health, and Environmental Communication from Marquette University (Milwaukee, WI). Stephanie is a Certified Clinical Research Coordinator (CCRC) and a Fellow of the Association of Clinical Research Professionals (FACRP).

Jenn Curry is Head of Patient Engagement Capability at Biogen. In this role, Ms Curry is accountable for driving the capabilities that ensure the patient perspective is incorporated in a manner that optimizes the execution of patient-focused drug development and maximizes the degree of impact on participant enrollment and the participant experience in Biogen’s clinical studies. She is heavily engaged with internal leaders and external partners to support the patient engagement strategies leveraged across Biogen’s portfolio.

Ms Curry entered the field of clinical research as a Research Assistant at Massachusetts General Hospital in 2003 and shifted her focus to industry, specifically patient recruitment, in 2006. Prior to joining Biogen in 2019, she spent 9 years at AES/Acurian Inc., advancing from Project Manager to Director of Operational and Strategic Solutions.

Caroline Melendez Daigle is the Vice President of Services for Carebox Health Solutions. Carebox connects patients and physicians seeking treatment options with clinical trials. The Clinical Trial Navigators, who are part of the Carebox Services team, help patients, families, and health care providers find clinical trials appropriate for a patient’s specific situation. Caroline started as a Clinical Trial Navigator over 20 years ago and personally helped thousands of patients and their families find treatment options in clinical trials. Caroline was also part of the clinical research program at Rockefeller University in New York and holds a BA in Psychology from The University of Texas at Austin.

Victoria DiBiaso, MPH, BScN, has 20+ years of clinical research experience. She holds a Master of Public Health and is a nurse by training. She has been awarded the distinction as one of the Top 20 Industry Innovators for her efforts to integrate insights from patient communities and clinical trial institutions into R&D decision making. Her work has been highlighted in the Wall Street Journal, various publications and keynote speeches.

More than a decade ago, she was one of the first industry leaders to establish a series of trial site & patient networks to provide advisory expertise to development staged clinical programs. These upfront partnerships have help transform the company’s development model whereby the therapies of tomorrow are not simply developed for patients but rather in partnership WITH patients and their stakeholders. This is reflected in the full end to end integration of patient experience and priorities across 100% of all indications, development programs and clinical trials at Sanofi; including prioritization decisions in the preclinical space.She recently established, and Chairs, the US based PALADIN Consortia bringing together advocacy and industry leaders to optimize collaborations that hold the potential to transform the pace of medicines development.

Ms DiBiaso is also an active research volunteer and advocate for the Parkinson’s Disease community. Aside from supporting clinical research education efforts, she has run 4 marathons and climbed Mount Kilimanjaro on behalf of Parkinson’s research and awareness.

Donna Dinkin, DrPH has a doctorate in public health leadership from the Gillings School of Global Public Health, at the University of North Carolina. For three decades, she worked as a leadership development consultant, helping leaders from global organizations strengthen their impact. In 2015, Donna was diagnosed with scleroderma-interstitial lung disease. Scleroderma is a rare, progressive autoimmune disease that thickens and stiffens connective tissues which are found in the skin and other internal organs, including the lungs.

Donna chronicled her path to building emotional resilience in the face of this diagnosis, in a memoir, Thursdays with Eugene (2023). Last year, as her health continued to decline, she decided to redirect her energies from career to volunteer efforts. Today, she leads a local scleroderma support group, serves as an Ambassador for the Pulmonary Fibrosis Foundation, and patient-advisor on studies which target people living with similar chronic illnesses.

When not volunteering, she can be found birdwatching, drawing with pastel chalk, eating Thai food with friends and spending time with her husband and two sons in Greensboro, North Carolina.

George Dorsett is Senior Vice President of Sales, Marketing and Growth at Clariness being responsible for commercial strategy, messaging and account governance. With around 12 years of experience leading commercial teams across patient recruitment and life sciences, he has worked in more than 100 indications and across 40+ countries. He is a strong advocate for fusing a patient-first approach with data-driven logic to drive better outcomes.

Leslie Michelle Dowling is the Site Manager at Sun Valley Research Center, where she has dedicated the past 13 years to advancing clinical research and ensuring operational excellence. A proud Hispanic professional and fluent bilingual speaker, Michelle brings a culturally competent approach to patient care and community engagement. She has extensive experience in regulatory compliance, team leadership, and patient-centered trial coordination. Michelle holds a Bachelor of Science in Applied Management and is deeply committed to fostering ethical, collaborative, and impactful research practices. Her leadership is grounded in a servant leadership philosophy that prioritizes team development, patient care, and long-term success.

With a true passion for patients and dedication to connecting people in need to resources, services and people, Wendy has built her career in patient advocacy in many rare disease communities and oncology. Wendy Erler MBA is the Senior Vice President of Patient Affairs at Sarepta Therapeutics where she leads the Patient Affairs team. Building a strong patient engagement strategy, she works to ensure patient centered outcomes across all areas of clinical development and commercialization. She is championing the adoption of patient-centric concepts and practices across the company while building trusted partnerships with patient advocacy organizations. Previously, Ms. Erler led the Patient Experience function for Alexion, Astra Zeneca Rare Disease. She built the enterprise model for patient engagement which ensured patient insights were reflected in all critical corporate strategies. At Wave Life Sciences, Ms. Erler led Patient Advocacy and Commercial. During her tenure, she set the groundwork for both functions as the organization moved from pre-clinical to initiating several rare disease clinical trials. Earlier in her career, Wendy held roles of increasing responsibility at Biogen starting in field sales and advancing through the commercial organization before serving as the Public Affairs head of patient advocacy for several rare disease programs. In these roles she gained experience in Newborn Screening, public policy, HTA’s, and bringing the patient voice into all aspects of drug development. Wendy graduated from Miami University and earned her MBA from St. Joseph’s University.

Amy Fesmire-Baus has spent over 15 years in the pharmaceutical industry, most recently working to break down patient barriers to clinical trial participation by incorporating the Patient Voice into clinical research protocols and building clinical trial awareness with Patient Advocacy Groups, all while making sure both efforts were inclusive of diverse populations. In addition, Ms Fesmire-Baus has managed the Engagement and Diversity Strategy across the Multiple Myeloma portfolio. What sets Ms Fesmire-Baus apart is her personal connection to the patient perspective. As a congenital heart disease patient and advocate, she has volunteered with a Patient Advocacy Group for over 10 years. Her contributions include serving as a Peer Mentor, as a contributing team member on several initiatives, and as Chair for fundraising events. Ms Fesmire-Baus’s commitment extends beyond organizational roles, as she has actively participated in Conference Scholarship Committees, leading the way in providing opportunities for others. Ms Fesmire-Baus’s passion for empowering patients is evident in her leadership role in developing an Education Strategy and creating a book specifically tailored to patients undergoing open-heart surgery as adults. Her dedication to sharing knowledge and empowering others is further exemplified by her role as a speaker at national and regional CHD conferences.

Judy Galindo is a first-generation bilingual Latina and the Executive Director and Co-Owner of Sun Valley Research Center, Inc., a private clinical research site located in Imperial County, California. With 20 years of experience serving a predominantly Latino and underserved population, Judy is deeply committed to increasing access to clinical trials in rural and underrepresented communities. She holds a Master of Advanced Studies in Clinical Research from the University of California, San Diego (UCSD) and a bachelor’s degree in biology with a background in Psychology. Judy has been a certified clinical research coordinator through the Association of Clinical Research Professionals (ACRP) since 2008.

In addition to her leadership at Sun Valley Research Center, Judy is the co-founder of Latinos in Clinical Research, The Clinical Research Circle, and Save Our Sites (SOS) and a Strategic partner of Vertex Clinical Research Mexico—initiatives focused on education, advocacy, and sustainability for clinical research sites, especially those in diverse and underserved areas.

Judy is passionate about advancing equity in clinical research and ensuring all providers and patients are aware of clinical research. She continues to champion efforts that make clinical trials more accessible, inclusive, and representative of all patient populations especially within her own community.

Martha Gauthier brings over 15 years of qualitative research expertise to her role as Vice President of Patient-Centered Outcomes at Lumanity. A member of the Lumanity Patient Center of Excellence, she provides strategic leadership to ensure patient engagement remains central to the design and validation of clinical outcome assessments. Ms Gauthier work spans diverse therapeutic areas, from dermatology and women’s health to rare pediatric conditions, translating patient experiences into meaningful measures that shape trial design and healthcare decisions.

Patrick Gee, Sr, PhD, JLC, is Founder & Chief Executive Hope Dealer, iAdvocate, Inc. Dr Gee graduated from the American University School of Public Affairs in 2012 with a Doctor of Philosophy in Justice, Law & Criminology. Dr Gee is a former Peritoneal/Hemodialysis patient due to suffering from Diabetic Kidney Disease. He has been a Post-Kidney Transplant Recipient since April 2017. Dr Gee is also a retired Major/Chief of Security from the Virginia Department of Corrections; and currently serves as the Founder & CEHD of iAdvocate, Inc., a non-profit Faith-based Health & Wellness organization. He is also an Ordained Minister at Mountain Movers Ministry in Richmond, VA. As a Patient Representative for the Diabetes Kidney Disease-Collaborative Task Force and an advocate for those living with chronic kidney disease and the morbid conditions that contribute to this disease, such as diabetes, cardiovascular disease, hypertension and obesity, Dr Gee uses his personal experiences to teach, coach, mentor and educate others on how best to manage their outcomes. He also ensures that underserved, undervalued and disenfranchised communities of color have a voice in their quality of life and equitable healthcare access. He also serves as Chair of the Kidney Health Initiative's Patient Family Partnership Council and is on ASN's APOL-1 Kidney Disease Steering Committee.

Kenneth A. Getz, MBA, is the Executive Director and Professor at the Tufts Center for the Study of Drug Development, Tufts University School of Medicine, where he conducts research focusing on drug development management and operating strategies and tactics; protocol design practices; and global outsourcing, investigative site and patient recruitment practices and policies. He is also the chairman of CISCRP – a nonprofit organization that he founded to educate and raise public and patient awareness of the clinical research enterprise. A well-known speaker at conferences, symposia, universities, investor meetings and corporations, Mr Getz has published extensively in peer-review journals, books and in the trade press and writes a bi-monthly column nominated for a Neal Award in Applied Clinical Trials. He holds a number of board appointments in the private and public sectors including WCG and ORA and serves on the editorial boards of Pharmaceutical Medicine and Therapeutic Innovation and Regulatory Science. Mr Getz received an MBA from the J.L. Kellogg Graduate School of Management at Northwestern University and a bachelor’s degree, Phi Beta Kappa, from Brandeis University. Mr Getz is the founder of CenterWatch, a leading publisher in the clinical trials industry.

Giulia Ghibellini, PhD is a leader with over 20 years of experience in drug development across multiple disciplines. Her expertise spans across early and late-stage clinical pharmacology, translational medicine, regulatory strategy, formulation development and patient engagement and advocacy. A dynamic communicator and coalition builder, she has founded nonprofits and businesses, led interdisciplinary teams, and influenced key decisions through proactive engagement with health authorities and executive stakeholders.

She has also cultivated strong advocacy experience in the disability and neurodevelopmental fields, both personally and within corporate environments. At Teva, Giulia leads the Patient Engagement Framework, a function she built from the ground up by leveraging her strategic thinking, resilience, and cross-functional leadership.

Sabina Schmidt Goldstein-Becerra is a passionate leader dedicated to putting youth at the center of pediatric healthcare, innovation, and research. As Executive Director of iCAN, she empowers pediatric patients to actively shape their healthcare journeys. With a background in education and child development, Sabina works with all stakeholder- industry leaders, youth, and parents- to bridge critical gaps in pediatric healthcare and ensure the landscape reflects the unique needs and voices of children, making their perspectives central to research, innovation, and decision-making.

Kurt Harrington, MBA is an experienced pharmaceutical executive and a Dupuytren’s and Ledderhose patient. He formed Ventoux Biosciences to help address the significant unmet medical need in Dupuytren’s Disease – a common, disabling, fibroproliferative hand disease with few treatment options.

Kurt is an accomplished leader with over 25 years of Biopharmaceutical experience. Prior to starting Ventoux Biosciences, Kurt served as a consultant and advisor supporting leadership, founders, and operators ranging from large-cap multinational companies to early stage start ups on commercialization, corporate strategy, business development, market access and product development. Kurt served in various positions of increasing responsibility at AstraZeneca, Biogen, Amylin (acquired by BMS), Cadence Pharmaceuticals (acquired by Mallinckrodt Pharmaceuticals), and Avanir (acquired by Otsuka Pharmaceutical).

Kurt received his MBA in Pharmaceutical Marketing from Saint Joseph’s University and B.S. in Marketing from Western Michigan University.

Jen Horonjeff, PhD, is a patient advocate and the Founder & CEO of Savvy Cooperative. She was named one of the 50 Most Daring Entrepreneurs by Entrepreneur Magazine, alongside Elon Musk and Reese Witherspoon, for her work at Savvy, which helps companies equitably gather input and insights from diverse patients. Dr Horonjeff is passionate about patient co-design as she grew up with numerous autoimmune diseases, and survived a brain tumor as an adult. She also holds a PhD in Environmental Medicine, and previously worked as a health outcomes researcher, a human factors engineer and user-centered designer, and an advisor to the FDA. Dr Horonjeff serves on the Board of Directors for The Sequoia Project, a non-profit focused on health data exchange, the Advisory Board of Trialbee, a clinical trial recruitment company, and numerous other committees. Utilizing her unique perspective, Dr Horonjeff strives to give patients a platform to have their experiences be heard, included, and equitably valued– because the future of healthcare is co-designed with patients.

Stacy Hurt, MHA, MBA, is an award-winning 25 year pharma executive who bridges the industry/consumer gap as a stage IV cancer survivor and 24/7 caregiver to her son with a rare disease. Her unique professional and personal experience position her as an esteemed patient advocate as well as an influential pioneer in Patient Engagement. In Ms Hurt’s role as Patient Advocacy Ambassador at Parexel, the first of its kind, she commands a seat at the table on behalf of patients and caregivers to examine and reduce patient burden thus increasing participation and retention along the clinical trial patient journey. Ms Hurt was named to the 2022 Medika Life Top 50 Influential Voices in Healthcare. She resides in Pittsburgh, PA with her husband and two sons.

Paris Johnson is a highly experienced clinical research professional with over 13 years of dedicated service at AstraZeneca in Site Management and Monitoring. With experience as a US Study Lead in both Biopharma and Oncology, she has a commitment to data-driven delivery with a patient-centric focus. Ms Johnson has played a crucial role in developing, implementing and executing strategies to increase the participation of underrepresented populations in clinical trials, development of Clinical Trial Diversity Action Plans and addressing health disparities within the US. Ms Johnson is a passionate advocate for ensuring that clinical trials reflect the diversity of the populations they aim to serve.

Maureen Kashuba has over 20 years of Pharma experience. She leads the Plain Language Summary (PLS) program at Merck Sharp & Dohme LLC, United States.

She led the development of the company’s > 1250 term Health Literate Glossary which has been reviewed, tested for cultural competency and approved for use internally. She’s led Patient Panel and Cultural Competency reviews to engage diverse insights on terms and concepts. Maureen co-chairs the DIA PLS Working Group is a member of the MRCT Center Glossary Development Review Team and the EFPIA CREG joint subteam on patient friendly language. She is passionate about clear communication of research information to empower patients to make informed health choices for themselves and their

Christa Kerkorian is vice president of Patient Advocacy at Day One Bio, a clinical-stage pharmaceutical company focused on developing new, more effective, and safer treatments for children with cancer. Day One’s clinical programs are focused on pediatric low-grade glioma (pLGG) and other pediatric and adult solid tumors. Christa joined Day One in 2021 to establish the Patient Advocacy function and support Day One’s clinical programs in pLGG, as well as to lead outreach and support for the broader pediatric cancer patient community. Her approach to patient advocacy has centered around establishing trusting, long-term relationships with patients, families, and advocates, elevating their voices, and facilitating community and capacity building to advance shared goals.

Prior to joining Day One, Christa spent six years at Agios Pharma. At Agios, Christa established and led Patient Advocacy, covering oncology and rare genetic diseases. Her work in these therapeutic areas included advocacy at the grass-roots and grass-tops levels and creating international partnerships and coalition building.

Before joining Agios, Christa spent nine years in Managed Care at Genentech. Her area of expertise was patient access, first with Genentech’s patient assistance programs and then in managed care marketing, where she led brand strategy and communications.

Christa earned a BA in Communications Studies from UCLA and an MBA from St. Mary's College.

Diagnosed in her teens, Sabina Kineen is passionate about educating others how the diagnosis of an inherited, rare disease can impact an entire family and sharing the unique perspective of living as both a patient and a caregiver. Ms Kineen strives to use her own life experiences, including her involvement and participation in clinical trials, to support patients and industry in order to build bridges and encourage health equity and patient engagement.

Dr Ann-Marie La Ronde-Richard is Director and Patient Engagement Lead in the Translational Clinical Sciences Unit in Pfizer Research and Development. Formerly Principal Scientist in the Internal Medicine Research Unit, Ann-Marie has been at Pfizer for a total of 17 years.

As Patient Engagement Lead, Ann-Marie is now in a unique position to bridge the gap between patients and those working to develop breakthrough therapies to improve their lives, ensuring that researchers better understand the experiences and unmet medical needs of diverse patient populations living with disease. Her role entails partnering with Patient Advocacy Groups, patients and their families to ensure that patients’ perspectives and needs are incorporated into the drug development strategy from beginning to end to ultimately improve health outcomes for all.

Dr La Ronde-Richard obtained her BS degree from Suffolk University in Boston and then completed her Doctorate in Pathology at Boston University School of Medicine. Dr La Ronde-Richard is also the cofounder of the Dominican Health and Education Initiative (DAHEI), a 501c3 organization founded in 2013, focused on improving the quality of life for Caribbean individuals, families and communities, including from her native island, Dominica, through enhancing education, healthcare and training.

Steve Levine, MD is a board-certified psychiatrist who has spent his career working across multiple facets of the healthcare system to improve people’s lives through creating access to innovation.

Steve completed internship and residency in psychiatry at New York – Presbyterian Hospital / Weill Cornell Medical Center. He then completed fellowship subspecialty training in psychosomatic medicine / psycho-oncology at Memorial Sloan Kettering Cancer Center/New York – Presbyterian Hospital. Prior to Compass, he led the company he founded in 2010, Actify Neurotherapies, that built new models of care delivery across the US for interventional psychiatry treatments. He has published extensively in both peer-reviewed journals and popular media, presented to both professional and lay audiences around the world, served in leadership roles for professional societies and not-for-profit entities, and received numerous awards for leadership and service.

Gonzalo Linares is the Global Head of Patient Advocacy in R&D at Johnson & Johnson, bringing over 20 years of experience in patient advocacy and corporate affairs. Based in Basel, Switzerland, he is responsible for bringing a systematic and strategic approach to the way J&J partners with advocacy organizations throughout the R&D process. Mr Linares began his career leading advocacy programs with oncology patient organizations in his native Spain in 2004, and has since held increasingly senior global roles in the UK and Switzerland. Most recently, he served as the Global Head of Patient Advocacy in R&D at Novartis, as well as the Global Executive Director of Patient Engagement Neuroscience at the same company, where he worked across Research, Development, and Commercial organizations to integrate the patient community’s perspective.

When he is not behind his desk, Mr Linares is passionate about nature in Switzerland while maintaining strong ties with his family and friends in Spain. Outside of work, he enjoys mountain biking, meditation, and CrossFit.

Misha Mehta is a scientist by training, a Board-Certified Patient Advocate, and above all a mother to her beloved son, Neev, whose brain tumor journey continues to inspire her work. That lived experience fuels her commitment to transforming pediatric brain cancer research, advocacy, and care.

She currently serves as Senior Director of Research at the Pediatric Brain Tumor Foundation, where she leads research strategy and cross-sector collaborations aimed at accelerating discovery and improving access to clinical trials. Misha is also the Founder and President of the Neev Kolte & Brave Ronil Foundation, working alongside families, researchers, clinicians, and policymakers to advance rare cancer research, dismantle data silos, and strengthen support systems for children and families facing devastating diagnosis.

Her advocacy spans national and federal efforts, including contributions to the White House Cancer Moonshot, rare disease policy work as a Legislative Advisor with the EveryLife Foundation, and service on advisory and scientific review boards with the Coalition Against Childhood Cancer, Friends of Cancer Research, PCORI, and the Department of Defense’s Congressionally Directed Medical Research Programs. At the heart of all her work is her son Neev whose courage continues to shape her mission and drive lasting change for children with brain tumors.

Laurie Myers has the honor of serving as the global health literacy director for Merck & Co., Inc. For the past eight years, she has led the company’s health literacy efforts in support of improved patient communications about clinical trials, medication, disease education, and packaging. She is also passionate about diversity and inclusion, specifically health literacy as a tool to address healthcare disparities. Myers speaks globally, and is frequently invited to serve on national and international working groups, often with patient advocates, regulators, and leaders from all sectors of health care. She advocates for policy change to make it easier for patients and their families to understand information about clinical trials and medication. Myers earned a national health literacy research award for efforts to include people with low health literacy in market research, and to confirm their understanding. She was recently named a 2018 Medical Marketing & Media Top 40 Healthcare Transformer. She has co-authored multiple publications. Myers graduated from Yale University, and earned an MBA in healthcare management from the Wharton School. She joined Merck in 1999. Before Merck, she worked for many years serving people with developmental disabilities.

Barry Nelson has been a resident of Boston for over thirty years and has deep ties to the local community. A retired risk management professional, with credentialing for business continuity and disaster recovery planning, Mr Nelson has a background in technology that extends across multiple industries, including financial services and banking, airlines, and government contracting.

Since 2012, Mr Nelson has served as a patient experience presenter and patient advisor and he regularly participates in patient and family centered conferences, patient experience panels, and other events where he discusses opportunities for improving long-term health care outcomes. Mr Nelson has participated on multiple research initiatives that focus on patient centered outcomes and healthcare improvements at the Brigham and Women’s Center for Patients and Families and the Dana-Farber Cancer Institute. Mr Nelson’s spirit of activism is centered on his Christian faith and he is the co-chair of the “Somebody Prayed For Me, Let Us Pray with You” weekly prayer call.

As a patient volunteer at Brigham and Women’s Hospital Center for Patients and Families, Mr Nelson supports several Patient Family Advisory Councils, Steering Committees, Patient-Centered Outcomes Research Initiatives (PCORI), and other research goals focused on patient care and engagement. Mr Nelson also volunteers at the Dana-Farber Cancer Institute and provides support for marketing, fundraising, and community outreach.

Mr Nelson is a volunteer and board member for common cathedral, a nonprofit faith organization focused on the homeless community, providing weekly worship on the Boston Common, Street Ministry, educational outreach program to youth and their support entities.

Michele M. Oshman is Senior Vice President and Head of Patient Advocacy at BIO. In her role, Michele leads BIO’s engagement with the patient advocacy community, supports BIO member companies’ patient advocacy and engagement needs, and ensures BIO’s policies reflect patient perspectives.

Michele joined BIO in January 2020 after a successful 18-year career at Eli Lilly and Company, where she led federal alliance development outreach. She started her career as a clinical neuroscience researcher and served in multiple clinical development and corporate leadership roles.

From 2012 to 2015, Michele served as Chair of the Biotechnology Innovation Organization Alliance Committee and held the same position with the PhRMA Alliance Development Section in 2016. She chaired the Arthritis Foundation Industry Forum from 2014 to 2016, and currently co-chairs the Lupus Foundation of America corporate council and serves on the Board of Directors for the National Health Council (NHC).

An active member of the Japan America Society of Washington DC, Michele graduated from American University with a dual degree in Political Science and Communications. She has two amazing adult children, a loving husband of over 25 years, and one oversized dog.

Tiffany Patrick, MPH, MBA joined Amicus in 2024 and currently serves as Chief Patient Officer. A longtime patient advocacy professional with experience spanning rare disease and oncology, she brings more than 20 years of leadership in the biotechnology industry. Her career has been dedicated to advancing the role of the patient voice —from early research through launch and access—with a focus on innovation and impact. Her forward-thinking leadership earned her a place among PharmaVOICE’s Top 100 innovators in life sciences for 2011.

Before joining Amicus, Ms Patrick held patient advocacy and other leadership roles in small- to mid-size biotechnology companies, led teams within medical communications agencies serving the life sciences industry, and operated a strategic consulting practice advising life science companies on patient engagement. She brings these diverse perspectives to her work with patient organizations around the world, helping to bridge scientific innovation with the lived experiences of patients and families.

Ms Patrick serves as a Strategic Advisor for Global Programs at the Oxalosis and Hyperoxaluria Foundation and is a member of The Max Foundation’s Max Think Tank. She is active across the rare disease and oncology biopharmaceutical landscape, bridging advocacy, development, access, and innovation.

She holds a degree in History from American University, a Master of Public Health from Benedictine University, and a Master of Business Administration from the University of Massachusetts, Amherst.

Andrew Pearlmutter is an Associate Director of Patient Centered Outcomes Science at BioMarin, with over 6 years of experience in patient-centered outcome (PCO) measurement design and implementation, with a focus on supporting digital health technology development and integration in clinical trials. Before joining BioMarin, Mr Pearlmutter was a Digital Biomarkers Consultant at Koneksa Health, a leading digital biomarker solutions provider. Mr Pearlmutter was also an inaugural member of Sanofi’s Digital Innovation team, where he led Sanofi’s efforts to build, test, and scale app- and wearable-based digital endpoints and health technologies in Parkinson’s Disease, Multiple Sclerosis, and rare diseases – including driving concept elicitation, regulatory engagements and clinical validation.

With over 30 years of experience across Sales, Training, Marketing, Market Access, Patient Advocacy, and Corporate Affairs, Josée Pelletier brings deep cross-functional expertise to advancing patient-focused innovation in drug development. She is currently Senior Director, Global Patient Advocacy – Research & Drug Development at Bristol Myers Squibb, where she leads global early engagement strategies to ensure patient perspectives are embedded in clinical trial design and execution. Her therapeutic experience spans oncology and multiple other areas, with a strong track record in leading global patient insight initiatives, developing early engagement frameworks, and driving strategic collaborations that support more inclusive, impactful research. Grounded in a background in science and supported by an Executive MBA, Josée combines analytical rigor with business acumen to align stakeholders around shared goals. Bilingual in English and French and experienced across Canadian, US, and international markets, she brings a global mindset, cultural agility, and a deep commitment to purposeful partnership in elevating the patient voice across the healthcare ecosystem.

Heather has spent most of her career in project, program, and change management for pharma software development and implementation. She joined Sanofi in 2014, and currently works in the global Patient Informed Development & Health Value Translation department. Heather and her team drive reporting and impact measures with a razor- sharp focus on commitment to listening and translating patient concerns and insights. This analytical data provided by Heather and her team delivers new health care solutions so that patients can experience improved quality of life. Heather’s other duties include providing operational, interdepartmental, and business management solutions, including AI-driven tools.

Parthena Psyllos is a Senior Corporate Counsel on the Clinical Development (CD) Legal team at Pfizer, Inc. in New York, where she is the lead counsel for Clinical Innovation. In this role, Ms Psyllos provides support and counsel on legal and regulatory issues impacting Pfizer’s clinical research activities globally, including Good Clinical Practice (GCP) advice and policy support to enable decentralized clinical trials, patient engagement and digital initiatives in clinical development such as eConsent, eSource, mobile apps, wearables and social media. She is also the CD Legal subject matter in several areas, including informed consent, study recruitment, diversity in clinical trials, and patient engagement activities.  Ms Psyllos has held several prior roles supporting clinical development issues at Pfizer. These included negotiating clinical development agreements, handling GCP and regulatory compliance issues in clinical trials, and conducting U.S. compliance investigations.  Prior to joining Pfizer, Ms Psyllos worked at Bloomberg as a Legal Analyst and in private practice at Kramer Levin Naftalis and Frankel as a litigation associate, with a focus on the pharmaceutical and medical device industries. She has served as Vice-Chair of the New York State Bar Association’s Food, Drug, and Cosmetic Law Section. Ms Psyllos has a BA in English and American Literature and Psychology from New York University, where she graduated magna cum laude and Phi Beta Kappa, and a JD from Brooklyn Law School. 

Madison Reider is a patient‑focused, innovative and results-driven leader experienced across R&D, patient insights and digital solutions. She has a proven ability to streamline processes, drive cross‑functional alignment, and deliver scalable systems that make meaningful impact on outcomes for patients. She's previously held roles across patient engagement, feasibility, enrollment planning and study operations at CSL Behring. She holds a Bachelor's degree in Biology and Anthropology from Dickinson College.

Nidhi Saxena is a healthcare leader with 20+ years of experience spanning market research, global operations, data & insights, and patient engagement across Fortune 500 companies. She currently leads Global Patient Engagement Strategy at J&J R&D, driving patient-centric innovation and large-scale solutions. Known as a collaborative, solution-driven leader, Nidhi focuses on patient centricity, innovation, and talent development to transform organizational impact.

Jessica Scott, MD, JD, is a Patient Engagement leader who brings to Legacy Health Strategies a combined acumen of medicine and law, together with innovative thinking allows her to drive culture change in medical product development within organizations which results in mutually beneficial outcomes for patients and industry. She is also an experienced ambassador for medical policy issues and patient engagement to organizations and agencies on a global level.

Dr Scott is known as a credible and trusted thought-leader and collaborator, bringing novel solutions, digital strategies, and patient-centered approaches to biotech, med tech and pharmaceutical industries and across multi-stakeholder groups.

Dr Scott has deep knowledge of the pharmaceutical industry with senior leadership positions at both GlaxoSmithKline and Takeda where her focus has been on building patient perspectives into the process of R&D, enhancing trust and fostering a sense of true partnership with patients. She leads by inspiring others and engendering high levels of engagement with skillful, timely, and consistent delivery of initiatives and solutions that bring more medicines of value to patients, faster.

Dr Scott has received awards for innovative and impactful work in Patient Engagement including the Trail Blazer Award and PharmaVoice100 as one of the top 100 most inspiring leaders in the industry. She is actively involved as a strategic advisor to Bioethics International, Patient Focused Medicines Development, DIA Patient Advisory Council and remains actively licensed to practice law in North Carolina where she also practiced as a Family Physician for over a decade.

At just 16 years old, Inaaya Shariq is a two-time osteosarcoma survivor, advocate, and active member of the pediatric cancer community. Diagnosed with osteosarcoma in her right thigh at age 11, Inaaya underwent 10 months of chemotherapy and a limb-salvage surgery that included an internal prosthesis and knee replacement. After two years cancer-free, she faced a recurrence at age 14, undergoing additional chemotherapy and a full right-leg amputation with hip disarticulation in April 2024.

Through her experiences, Inaaya has become a passionate voice for pediatric cancer awareness and patient engagement in research. She serves as a member of iCAN Illinois KIDS at Ann & Robert H. Lurie Children’s Hospital and on the MIB Agents 2025 Junior Advisory Board, helping to amplify youth perspectives in cancer advocacy and clinical research. Outside of her advocacy work, Inaaya enjoys reading, writing, swimming, watching movies, and spending time with friends and family.

Anthony K. Taylor, DHSc, MSPharm, is an experienced leader, executive, former clinical research scientist and U.S. Army medic with comprehensive industry knowledge and a proven record for delivering results within large, mid-size, and small pharmaceutical organizations. Dr Taylor is Project Management Professional (PMP®) Certified and has a solid background in leading global clinical programs and teams. He has been in the pharma industry for almost 20 years and has held positions of increasing responsibility. When he is not leading large cross-functional initiatives, Dr Taylor enjoys spending time with his family and playing tennis in the U.S. Tennis Association (USTA). He is recently married, has two children, and lives in the Chicago-area with his family.

Muffy Walker is an author with a passion for crafting compelling fiction that educates and inspires. Through her stories, she aims to shed light on important topics, spark meaningful conversations, and foster greater understanding.

Her path to becoming an author has been shaped by a rich background in mental health advocacy. As the founder of the International Bipolar Foundation, she has dedicated much of her life to raising awareness and reducing stigma surrounding mental health. She holds a Master of Science in Psychiatric Nursing from the University of Pennsylvania and an MBA, and has written extensively on mental health topics, contributing chapters, guides, and newspaper articles to the field.

Muffy now channels that experience into her fiction, weaving together her professional expertise and personal passions to create stories that entertain while offering insight into complex, real-world issues. Her goal is to educate readers in a way that feels natural, engaging, and thought-provoking.

When she’s not writing, Muffy loves exploring exotic destinations, savoring decadent chocolate desserts, and spending time with her dogs. She is also an avid pickleball player and enjoys the strategy and fun of Mah Jong.

Through her writing, she hopes to connect with readers on a deeper level, offering not just stories but opportunities to learn, reflect, and grow.

Angela Wheeler is President of Lumanity’s Insight practice in the US and leads the company’s Patient Center of Excellence, championing the integration of patient and consumer perspectives into life sciences strategy. With over 20 years in healthcare marketing research, she guides a multidisciplinary team applying qualitative, quantitative, and UX methodologies across therapeutic areas including rare disease, neurology, and mental health. Ms Wheeler passion lies in capturing and contextualizing patient needs to drive product innovation, improve health outcomes, and accelerate access to medical advances.

Robert (Bobby) Wiseman Jr. is a native of San Francisco, California and currently resides in Sacramento, CA. He attended St. Ignatius College Prep, University of California – Berkeley (Professional Development Program), University of California – Davis (Applied Behavioral Sciences) and the traditional-untraditional school of life. He is currently a Master of Divinity (MDiv) and Master of Arts (MA) Candidate 2026 at the Pacific School of Religion, with a concentration in both Social Justice and Social Transformation. He has personal lived experience with a number chronic, long-term financially and psych-socially expensive-challenging-motivating clinical diagnosis. He is a combination of his family of birth, family of choosing, travels to various places around both the US and the world. Bobby has had the true pleasure of working in collaboration with those who have been termed challenging, non-compliant, traditional, and non-traditional. In his 52 years of life, he has had the priceless gift of having both comfortable and uncomfortable conversations; being a parent, son, uncle, true friend and advocate. He has effectively and successfully lived with a few chronic, manageable health conditions. He has navigated systems, structures, ideology, emotions, and feelings with a sense of seeing “what can be.” Bobby is enthusiastic about creating meals from farmer’s market finds, thrift store re-crafting, and hours with I Love Lucy, Golden Girls and Boomerang. Bobby has been called a social justice advocate, a catalyst for change as well as a person that seeks to gain/increase knowledge by ACTUALLY hearing from those with different viewpoints and landscapes and having REAL understanding, clarity, and communication.

For those who need more understanding, clarity pertaining to Bobby here are a few components:

• A direct outcome of his parents, grandparents, siblings, friends, and communities of faith, relationship, and connection

• Minister & Founding Member – Ekklesia Deliverance Center, Church of God in Christ Inc – Orangevale, CA

• Ordained Deacon – United Church of Christ – Bishop Yvette Flunder, Presiding Prelate – The Fellowship of Affirming Ministries/Founding Pastor/Senior Pastor – City of Refugee, UCC (Oakland, CA)

Sarah Woods is a Rare Disease Patient, Rare Mom and Patient Speaker with over 20 years of experience as a business leader and communications professional. Sarah has a passion for helping rare disease patients and caregivers through providing patient resources and rare diseases awareness, nationwide, as the Founder of the Serenely Guided Foundation for Rare Diseases, a 501(c)(3) public charity and non-profit organization. Through her own personal rare disease journey, Sarah brings innovative and experiential thought leadership to the areas of building patient-centricity in clinical trial design by placing patients and caregivers in leadership roles at sites and within pharmaceuticals to consult on strategies in order to incorporate patient perspectives every step of the way to achieve better health outcomes for the entire rare disease community. You can view Sarah's LinkedIn HERE.

As the Director of Patient Advocacy for Day One Biopharmaceuticals, Kelli Wright is honored work with patient communities, people living with childhood cancer, caregivers, and non-profit foundations to better understand what it’s like to live with their disease.

With experience and a focus on rare diseases and pediatric oncology, Kelli is passionate about including the patient & caregiver experience into all areas of drug development.

Patient Advocacy is the connecter between patients and families and the teams within Day One. It’s critical to include the patient voice in drug development efforts as the company makes drug development and business decisions. What we do every day will ultimately and directly impact the disease communities we serve.

With a 15+ year non-profit career, Kelli has a deep understanding of the patient needs and experiences. Kelli was the National Director of Strategic Initiatives for CureSearch for Children’s Cancer, driving the strategic program of CureSearch by staying in tune with the barriers in drug development. Kelli learned from innovators in the industry, academic and regulatory space, as well as patients and disease-foundations, to address obstacles and develop action plans to close the communication gaps and reduce duplication of efforts.

Kelli resides in South Carolina with her family. She is passionate about nutrition and enjoys hunting for shark’s teeth on the weekends.

Maya Zlatanova is a healthtech entrepreneur and clinical research expert on a mission to bring research closer to patients. With 15 years of global experience spanning clinical research regulations, patient recruitment, and trial feasibility, she has witnessed firsthand how 45% of clinical trial amendments can be avoided simply by understanding patients better from the start.

She believes the industry's biggest breakthrough will come from combining AI-powered data intelligence with deep understanding of patient journeys - aligning trials with real-world treatment pathways before recruitment even begins. Ms Zlatanova's work focuses on connecting the dots between where patients naturally seek care and where clinical trials are conducted. Through her leadership in developing TrialHub, she's helped pharmaceutical companies design smarter protocols and avoid the trial design mistakes that lead to enrollment failures.

Her driving belief: Every delayed trial means patients waiting longer for life-changing treatments.