9th Patient-Centered Engagement World Congress 2026 Americas
“Part of The Patient Centricity & Collaboration Series”
Driving Partnership, Access & Measurable Outcomes
17th – 18th September 2026, Boston, MA, USA
50 + KEY INDUSTRY EXPERT SPEAKERS
- Tom Croce, VP, Global Patient Advocacy & Engagement, Jazz Pharmaceuticals
- Linda Kollmar, AVP, Patient Insights & Engagement Value & Implementation, Merck
- Sarah Woods, Founder, Serenely Guided Foundation
- Jennifer Helfer, Senior Director, Patient Advocacy & Engagement, Viridian Therapeutics
- Rasmus Hjorth, Patient Engagement Director, James Lind Care
- Sarah Cross, Senior Health Value Translation Lead, PDMD, Sanofi Global Research & Development
- Christian Rubio, Executive Director, EverythingALS
- Jessica Riviere, Head of U.S. Patient Advocacy and Engagement, GSK
- Bonnie Perkins, Senior Director, Global Patient Engagement Center of Excellence, Alexion
- Debra Miller, Chief Executive Officer/Founder, CureDuchenne
- Nikki Rohan, VP, Global Advocacy and Community Engagement, Bicara Therapeutics
- Erica Alshehabi, Sr. AD, Patient Recruitment and Representation, Boehringer Ingelheim
- Julissa Viana, SVP, Corporate Communications, Investor Relations & Patient Advocacy, Verastem Oncology
- Corey A. Straub, Patient Advocacy & Engagement Lead, QurAlis
- Matt Nestor, Vice President, Development Strategy and Partnerships, Partner Therapeutics
- Jordanna Mora, Vice President, Patient Advocacy & Centricity, Beam Therapeutics
- Jessica Bateman, Senior Director, Advocacy and Professional Relations, Geron Corporation
- Amy Mackey, US Patient Advocacy, Attending Physician, Merck
- Yiyi Xia, Senior Director, Patient Engagement Strategy and Operations, Sarepta
- Laura A. Williams, Chief Patient Officer, ardelyx
- Behtash Bahador, Senior Director, Community Engagement & Partnerships, CISCRP
- Jessica Bateman, Senior Director, Advocacy & Professional Relations, Geron Corporation
- Jaye Bea Smalley, Executive Director, Patient Advocacy, Kyverna Therapeutics
- Ulrich Neumann, Director, Access & Policy Research, Johnson & Johnson
- Frank Rivera, President/Founder, Sarcoidosis of Long Island
- Rob Goldstein-Mahon, Executive Director, Patient Advocacy, Ionis Pharmaceuticals, Inc.
- Heather Pin, Head, Patient Centricity Operational Effectiveness, Sanofi*
- Dakar De La Cruz, Global Director, Patient Advocacy, AstraZeneca
- Amy Grover, Executive Director of Patient Advocacy, Catalyst Pharmaceuticals
- And many more...
Linda Kollmar
AVP, Patient Insights & Engagement Value & Implementation
Linda Kollmar, MD, FACC leads the Patient Insights and Engagement (PI&E) team and holds the position of Associate Vice President in Value & Implementation. Under Linda’s leadership, the PI&E team collaborates with patients to understand their experiences, capture insights, and develop solutions to advance our work across the organization and product lifecycle. Prior to this role, Linda was an Executive Director in Global Medical Affairs, Oncology, where she led the Medical Consult and Review Physician team and was the Patient Advocate Lead for Medical Affairs - Oncology. Other former roles include that of Executive Director in the Office of the Chief Patient Officer where Linda was responsible for leading and facilitating the planning and execution of Patient Engagement activities to ensure that the patient’s perspective remained central to MSD’s mission. Linda collaborated with partners inside and outside of MSD to solicit and include the voices of the patients in and across the MSD enterprise. Prior to this, Linda worked in the MSD MedicalInformation department for seven years, where her focus was first on Cardiovascular medicines. She transitioned to Oncology in 2013 and supported the successful launches of Keytruda for Melanoma and Lung Cancer.
Before joining MSD, Linda worked in private practice as a Non-Invasive Cardiologist. She graduated from Emory University with a Bachelor of Arts degree in Art History. Linda earned her MedicalDegree from Temple University School of Medicine and completed her Internal Medicine Residency at the University of Pittsburgh Medical Center and her Cardiology Fellowship at Hahnemann University Hospital.
When not at work she enjoys spending time with her husband, Jim, three sons, Jack, Ben, Will, family, friends and Havanese dogs (Lilly and Daisy). She enjoys cooking, reading, and exercising.
Sarah Woods
Founder
Sarah Woods is a Rare Disease Patient, Rare Mom, Patient Speaker, Business Leader, and Communications Professional with over twenty years of experience in the Consumer Product Goods industry. Sarah has a passion for rare disease patients, caregivers, patient resources and rare disease awareness. She is the Founder of the Serenely Guided Foundation, Inc. a 501(c)(3), non-profit organization, dedicated to improving the lives of patients, families, caregivers and those affected by all rare diseases. She brings innovative and experiential thought leadership to the areas of creating stronger patient-centricity in clinical trial design as well as how to innovate for patient resources with collaboration from the consumer products industry. She is revolutionizing how to give back to rare patients and caregivers through her creation of the SGF Patient & Caregiver Care Boxes, shipped nationwide, to patients and caregivers of all rare diseases and specially curated with unique self-care, nutrition, and wellness products, as well as encouraging youth empowerment and leadership for better health outcomes in rare diseases with offering SGF Youth Rare Awareness Kits & Enrichment Sessions for students in grades K-12.
Jordanna Mora
Vice President, Patient Advocacy & Centricity
Jordanna Mora, MS, LCGC, MBA, Vice President, Patient Advocacy & Centricity, Beam Therapeutics leads the integration of patient insights into the development of gene editing therapies as well as educational efforts aimed towards patients, caregivers, and patient groups. A trained genetic counselor, she brings experience across medical affairs, commercial, and patient engagement, with prior roles at Alnylam Pharmaceuticals and Clementia Pharmaceuticals. Jordanna co-founded Inherited Health, a digital platform designed to support individuals and families in understanding hereditary disease risk, and holds degrees from UCLA Anderson School of Management, Sarah Lawrence College, and Barnard College of Columbia University.
Nikki Rohan
VP, Global Advocacy and Community Engagement
Nikki Rohan is Vice President, Global Advocacy and Community Engagement at Bicara Therapeutics and a biopharmaceutical executive with more than two decades of experience building patient-centered strategies that advance drug development, commercialization, access, and community engagement. Throughout her career, she has established and led advocacy functions at organizations ranging from clinical-stage biotechnology companies to global biopharmaceutical leaders, including Bicara Therapeutics, Wave Life Sciences, Alkermes, Vertex Pharmaceuticals, and Genentech.
Nikki is recognized for helping organizations authentically integrate patient and caregiver perspectives into decision-making, clinical development, launch planning, and corporate strategy. Her expertise spans oncology, rare diseases, central nervous system disorders, and cystic fibrosis, with a particular passion for fostering meaningful partnerships that improve outcomes for patients and families.
A trusted advisor to executives and cross-functional teams, Nikki has guided organizations through complex clinical, regulatory, communications, and reputation challenges while maintaining a steadfast commitment to transparency, health equity, and community engagement. She is widely respected for building enduring relationships with advocacy organizations and for championing approaches that transform patient insights into action. Known for building advocacy functions from the ground up, Nikki has helped shape patient-centered cultures and strategies that create lasting value for both communities and organizations.
Dakar De La Cruz
Global Director, Patient Advocacy
Bringing nearly 20 years as a biotech and medical devices leader in rare and high prevalence diseases, Dakar De La Cruz has a passion that is rooted in developing and executing strategies centered on what matters most to people living with or affected by medical conditions. With a proven track record of success that has included both US and Globally focused Commercial and Medical roles in Sales, Marketing, Strategy, and Insights & Solutions, Dakar’s knack for creating innovative content and initiatives that motivate stakeholders to think, feel, and act differently is unparalleled.
Dakar’s professional experiences with Epilepsy, Schizophrenia, Crohn’s, NMOSD, Generalized Myasthenia Gravis, Hypophosphatasia, Neurofibromatosis Type 1, Acromegaly, Rare Oncology, Amyloidosis, Hypoparathyroidism, and other disease states coupled with her personal experiences as a Caregiver and a Patient have contributed to a unique perspective that effortlessly combines head and heart to maximize impact, reach, and profitability. Ever committed to elevating patient voices throughout a medicine’s lifecycle, Dakar is a champion for patient advocacy and community impact.
Holding both undergraduate and MBA degrees with concentrations in Marketing, Dakar is an avid gardener who enjoys teaching her mini golden doodle new tricks!
Yiyi Xia
Senior Director, Patient Engagement Strategy and Operations
Yiyi Xia is a rare disease leader focused on building and scaling innovative, patient-centered functions across life science organizations. She currently serves as Senior Director of Patient Affairs Strategy and Operations at Sarepta Therapeutics, where she brings a cross-functional perspective shaped by leadership experience across Commercial, Medical, and Patient Affairs.
Known for combining strategic vision with operational excellence, Yiyi ensures that patient insights and engagement are embedded into key decisions across the asset lifecycle—from early research and clinical development through launch planning and global commercialization. Her perspective is also shaped by more than a decade at Deloitte Consulting, where she advised clients through enterprise transformations, as well as subsequent experience advancing rare disease assets spanning neurology, metabolic disorders, hematology, and cardiology.
Yiyi holds an MBA from the MIT Sloan School of Management and a BA in Economics and Finance from Bentley University.
Amy Mackey, MD
Global Director Gynecologic Oncology Patient Insights & Engagement
Amy Mackey, MD is the Global Director of Gynecologic Oncology Patient Insights and Engagement at Merck. She joined Merck approximately 6 years ago as a Medical Consult and Review Physician. Before Merck, she practiced for over 20 years as an Obstetrician and Gynecologist. During her clinical career, Amy held many leadership positions such as the Medical Director of the Labor and Delivery Unit, OB/GYN Patient Safety Officer, Head of the Faculty Teaching Group, Residency Program Director and Vice Chair of the OB/GYN Department. Amy graduated from Lafayette College with a BS in Chemical Engineering and received her Medical Doctorate degree from Temple University School of Medicine.
Jaye Bea Smalley
Executive Director, Patient Advocacy
Jaye Bea Smalley is a nationally recognized leader in patient advocacy and engagement in the life sciences. She is currently serving as Executive Director of Patient Advocacy on the Corporate Affairs team at Kyverna. With 15 years of experience spanning the public and private sectors, she has shaped how the life sciences industry thinks about, measures, and delivers meaningful patient engagement.
A National Urban Fellow and alumna of the Baruch School of Public Affairs, where she earned her Master of Public Administration, Jaye Bea brings a rare combination of policy fluency, scientific rigor, and strategic acumen to her work. She is an active member of Professional Patient Advocates in Life Sciences and the Patient Engagement Professionals Society and is widely regarded as a thought leader whose influence extends beyond her organization.
Her peer-reviewed publications and sought-after presence on conference stages reflect a career built on advancing the field. That commitment to elevating the discipline culminated in the development of the Smalley Method Impact Framework™, a proprietary methodology that introduces an empirical, evidence-based approach to assessing and evaluating patient advocacy and engagement across the life sciences. It is among the first frameworks of its kind, and a defining contribution to the profession.
Outside of work, Jaye Bea is an avid skier, accomplished cook, and enthusiastic host who takes full advantage of everything New York City has to offer, from its world-class theater and art to its fashion and culinary scenes.
Laura A. Williams
Chief Patient Officer
Dr. Williams is a life sciences executive leader with extensive experience as a pharmaceutical drug developer, healthcare policy advisor, patient advocate, and portfolio strategist. She is an accomplished, results-oriented, physician scientist and board member who is committed to discovering, developing, and commercializing innovative therapies that address unmet medical need. With nearly 30 years of pharmaceutical experience in both large pharma and smaller biotech, across all clinical development phases and multiple therapeutic areas, she has a proven track-record in drug development, as indicated by her major contributions on key regulatory approvals (NORVIR®, KALETRA®, ZEMPLAR®, VIEKIRA PAK®, ORILISSA®, ORIAHNN®, VYLEESI® and XPHOZAH®), resulting in enhanced patient access to innovative therapies and increased revenue to fuel additional clinical development and shareholder value.
From a Board perspective, she brings the subject matter expertise, strategic focus, and business acumen necessary to advance programs that are pivotal to the success of both private and public companies. Her experience as a practitioner, researcher, patient, and patient advocate provides a unique perspective as an enterprise-wide leader and board member.
Corey Straub
Patient Advocacy & Engagement Lead
Corey Straub is the Patient Advocacy & Engagement Lead at QurAlis, where he advances strategic partnerships with patient organizations and ensures that patient perspectives are integrated across both pre-clinical and clinical development programs. He is also a co-founder of the International Network for ALS Research & Care (INARC), a global initiative fostering collaboration in ALS research and care. Previously, Corey established the Patient Experience program at the Montreal Neurological Institute, strengthening patient and caregiver engagement in clinical research. He did his Master’s research on Ancient Greek Cuisine at McGill University.
Christian Rubio
Executive Director
Christian Andrés Rubio is Executive Director of EverythingALS, where he leads the organization's pre-competitive biopharma consortium focused on advancing patient-centered clinical research endpoints through real-world data, digital biomarkers, and validating innovative outcome measures. He works across regulators, industry, academic medicine, and patient communities to accelerate the development of more meaningful and accessible approaches to therapeutic development.
Over the past two decades, Christian has held leadership roles spanning biotechnology, nonprofit, and health technology organizations, building patient engagement and digital strategy programs that support clinical research, product development, and commercial innovation. His work has helped organizations navigate emerging models of decentralized research and collaborative evidence generation, including initiatives involving partners such as AWS and the Chan Zuckerberg Initiative.
Inspired by his own experiences with rare disease and a career deploying human-centered technology solutions in underserved communities, Christian has dedicated much of his career to advancing more equitable and patient-centered approaches to drug development. He is an active advocate for cross-sector collaboration through organizations including the Rare Disease Diversity Coalition. Christian holds an MBA in Entrepreneurship from Babson College and a BA from Williams College, and recently retired from coaching his two daughters' soccer teams—though he admits he still misses being on the sidelines.
Julissa Viana
Senior Vice President, Corporate Communications
Julissa Viana is Senior Vice President, Corporate Communications, Investor Relations & Patient Advocacy at Verastem Oncology. She brings more than 25 years of experience in integrated strategic communications, having led corporate communications, investor relations, and patient advocacy for companies at every stage of development, from clinical stage through the launch of more than a dozen medicines.
Prior to her current role, Ms. Viana led communications and investor relations at Xilio Therapeutics, a clinical-stage immuno-oncology company, where she also served as Chief of Staff to the CEO. Before that, she led global oncology communications at Merck KGaA/EMD Serono across the US, EU, Japan, and China, supporting the oncology franchise, including Bavencio® and Tepmetko®, and an investigational pipeline. Earlier in her career, she spent nearly a decade at Celgene, where she built and led the company's global social media function and directed communications for major oncology launches, including Abraxane® for metastatic lung and pancreatic cancers. Ms. Viana has also held communications roles at Sunovion, Novartis, and Sanofi, spanning a broad range of therapeutic areas including CNS (Latuda®, Lexapro®), and cardiovascular (Exforge®) and metabolic diseases (Acomplia®, Lantus®). She began her career in healthcare communications at GCI Group and Ketchum. Prior to that, she served as an official spokesperson for the American Red Cross of Greater New York.
Ms. Viana is an active member of the nonprofit community and has served on several nonprofit boards. She completed the Program for Leadership Development at Harvard Business School and holds a Bachelor of Fine Arts in Public Relations from Long Island University.
Rasmus Hjorth
Patient Engagement Director
Rasmus Hjorth has several years of experience working with engaging patients in clinical research as Head of Communication in the patient recruitment company, James Lind Care. His work experience centers around how to engage patients in clinical trials which includes working with developing services and communication that increases the awareness and interest about clinical research among patients. He also has years of experience developing advertisement- and information material for recruiting patients to clinical trials, resulting in engaging thousands of patients in several clinical trials.
Rasmus holds a Masters degree in communication and besides his job as Head of Communication in James Lind Care he is also a member of the board in the Danish Lung Patient Association.
Mauvareen Beverley
Patient Engagement
Dr.Beverley is President of Mauvareen Beverley, MD. PLLC, Patient Engagement and Cultural Competence Specialist and has developed a Patient Engagement and Cultural Competence Training program that was accepted for presentation at various health systems. Dr.Beverley’s book entitled 9 Simple Solutions to Achieving Health Equity: A Guide to Healthcare Professionals and Patients is available on Amazon.
Jessica Bateman
Senior Director, Advocacy & Professional Relations
Jessica Bateman is a healthcare advocacy leader with experience advancing patient-centered initiatives across rare disease, oncology, nephrology, rheumatology, and immunology. As Senior Director of Advocacy & Professional Relations at Geron Corporation, she partners with patient organizations, healthcare professionals, and policymakers to develop programs that improve education, access, and quality of care. Throughout her career, Jessica has championed innovative advocacy, awareness, and policy initiatives that empower patients, elevate community voices, and foster meaningful collaboration across the healthcare ecosystem.
Tricha Shivas
Chief of Staff and Strategy
Tricha Shivas joined the Foundation for Sarcoidosis Research (FSR) in December of 2020 as the Chief of Staff and Strategy. Tricha has 20 years of non-profit leadership experience dedicated to improving the lives of those with complex chronic illness and rare diseases. Throughout her career, she has built comprehensive patient engagement and awareness programming, developed robust diversity, inclusion, and equity programming, worked with the NIH, FDA, academic researchers, and industry to expand therapeutic pipelines and to increase patient centricity in drug development. Tricha has played a pivotal role in FSR’s Ignore No More Campaign focused on awareness and increased clinical trial diversity.
Tricha received her bachelors in American Studies from Albright College and her Masters of Bioethics from University of Pennsylvania. She currently serves on Drexel University’s Health Administration Department Advisory Council is on Global Skin’s Rare Disease Steering Committee and past co-chair the NIAMS Coalition.
Ulrich Neumann
Director, Access & Policy Research
Ulrich Neumann is a leader in the Scientific Affairs group at Johnson & Johnson, where he oversees research projects and academic collaborations focused on health and innovation policy evidence generation. He is a founding director at the U.S. Healthcare Policy Research Center at J&J, where he directs studies and methods development in value assessment, innovation policy, and insurance design.
Previously, Ulrich held senior leadership roles at Certara, a global drug‑development and analytics platform, and at Analytica Laser, an international HEOR consultancy. He also founded Pharmvivo, a firm specializing in commercial due diligence, and served as U.S. Managing Director of a pharmaceutical market insights and networking firm later acquired by Thomson Reuters.
A recognized industry expert on drug pricing, access, and innovation policy, Ulrich has authored numerous research articles, white papers, and policy reports on topics including R&D economics, payer management, risk‑based contracting, and financing models for cell and gene therapies. His work has been presented at major international conferences and published in leading journals, including Nature Reviews Drug Discovery, Health Affairs Scholar, and Medical Economics. Trained in public and business administration, Ulrich holds graduate degrees from Imperial College London (MBA), the London School of Economics (MSc), and the University of Southern California Annenberg School (MA), as well as executive and technical certificates from MIT, the Kellogg School of Management, and Columbia University.
