Hi, I'm Joshua Henderson and I'm on a mission to accelerate treatments for rare diseases.

I combine skills across real-world evidence, patient advocacy, innovation, and AI to improve healthcare outcomes and quality of life for individuals with rare diseases, their families, and their caregivers.

15+ years life science BD & strategy

5+ years real-world evidence generation

5+ years patient advocacy & policy


My Journey

My commitment to rare diseases isn't just professional—it's deeply personal. When my father passed away from Multiple Myeloma in 2008, I witnessed firsthand the challenges patients and families face when navigating complex healthcare systems. The loss of my brother Brenton to suicide in 2014 further reinforced my understanding that life is precious and that every moment we have to make a difference matters.What started as grief became purpose: these experiences transformed my perspective on healthcare and ignited an unwavering dedication to improving outcomes for others facing similar struggles.Phase 1 of my career was spent fine-tuning my entrepreneurial DNA.Over 12 years at Springboard Enterprises, I supported nearly 400 early-stage life science companies and witnessed remarkable technological advances that enable more precise disease targeting. This experience showed me the incredible potential of innovation when paired with genuine understanding of patient needs. Thanks to a collaboration with Ultragenyx, I was introduced to the rare disease community and knew these were the people I wanted to work with and for and beside.Phase 2 of my career has been to immerse myself in patient-focused drug development.My work then evolved to encompass real-world evidence generation, patient advocacy, strategic investment, and policy development—all unified by a single goal: accelerating treatments that change lives. Over the past 5 years, I have:- Served as Head of Rare Diseases at Pulse Infoframe, where I partner with patient advocacy groups and biopharma companies globally to generate high-quality, regulatory-grade real-world data across 20+ disease areas.- Co-founded the NW Rare Disease Coalition, which advocates for policy changes that improves access to care and diagnostic testing for individuals with rare diseases.- Co-founded StageNext, where I invest in women-led companies including those with innovative solutions applicable within the rare disease space.My journey has been enriched by my partnership with Meghan Henderson, who has been my constant companion through both challenges and triumphs. When her career took us overseas in 2014, I embraced remote work from Italy, Germany, Seattle, and beyond—experiences that expanded my global perspective on healthcare challenges and deepened my connections within the international rare disease community.


My Unique Perspective

- Building Bridges Across the Rare Disease Community: I bring together the people who matter most—patient families, drug companies, regulators, and investors—to solve problems that no one can tackle alone. By understanding what drives each group and keeping patient needs at the forefront, I help create solutions where others see roadblocks.- Seeing What Works (and What Doesn't) in Healthcare Innovation: Having both pitched for startup funding and written the checks as an investor, I understand what actually moves the needle in healthcare. This dual perspective helps me spot promising technologies and realistic business models that can be applied within a larger company or as its own venture.- Turning Patient Stories into Strategic Insights: I help transform patient experiences into actionable intelligence that shapes better drug development. Instead of treating patient input as a nice-to-have, I show how authentic patient insights can speed up timelines, improve trial design, and create treatments that truly work for real people.- Breaking Down Barriers to Care and Testing: Through grassroots work with patient families and policy advocacy, I've learned firsthand why patients struggle to get diagnosed and access care. I focus on untangling the complex web of insurance, policy, healthcare systems, and patient advocacy to create real solutions that work at scale.- Designing Studies That Actually Work: I've been in the trenches building patient registries, writing study protocols, and creating documentation that regulators actually approve. This hands-on experience means I know what works in the real world, not just what looks good on paper.- Closing Major Deals in Pharma: I've successfully closed 6 and 7-figure deals with pharmaceutical companies by navigating complex procurement processes and building trust with decision-makers. I know how to communicate technical value in business terms and build consensus among stakeholders who don't always share priorities.


My Areas of Inerest

Accelerate Treatment Development

Champion of the patient voice in drug development, in taking a portfolio approach, and in the value of a research infrastructure that leverages real world evidence.

Expand Access to Diagnostic Testing

Champion of increased reimbursement for genetic counseling services, expanding coverage for WGS and rWGS, and augmenting the newborn screening panel.

Improve Access to Care

Champion for improving complex care coordination, addressing the needs of families and caregivers, and mental health support.


Let's Connect

If you share my interests and feel I can in any way support your work, please don't hesitate to reach out to me on LinkedIn to share more.