2026 Leadership Lab
Global Genes is proud to partner with the Termeer Institute to launch Leadership Lab, a full-day immersive experience for rare disease patient advocacy leaders.
November 4, 2026 | Boston, MA
December 2, 2026 | San Diego, CA
Register Boston Register for San Diego
Building Relationships That Move Your Mission Forward
Patient advocacy organizations often have a clear vision for the impact they want to create—but progress can stall when critical relationships aren’t in place, stakeholder priorities aren’t aligned, or partnerships fail to gain momentum.
Whether you’re seeking funding, engaging researchers, building industry partnerships, or expanding your organization’s influence, success often depends on your ability to build trust, navigate competing interests, and create relationships that lead to action.
Join Global Genes and the Termeer Institute for the inaugural Leadership Lab, a new leadership development series designed to help patient advocacy leaders strengthen the relationships that drive meaningful progress.
This event is designed for patient advocacy leaders who are in a leadership role within their advocacy organization.
November 4, 2026
David Rubenstein Treehouse, Harvard University 20 Western Ave Boston, MA 02134
December 2, 2026
Travere Therapeutics 3611 Valley Center Drive, Suite 300 San Diego, CA 92130
Strategic Partnerships & Negotiation
Learn how to:
- Understand what motivates funders, researchers, industry partners, and other stakeholders
- Build trust and credibility
- Create partnerships that advance shared goals
- Navigate difficult conversations and competing priorities
- Recognize common pitfalls that can cause collaborations to stall, lose momentum, or fail to deliver results
Leading Through Relationships
Explore how leaders can:
- Build stronger, more productive relationships across sectors
- Turn influence into action and collaboration into results
- Identify practical next steps to create momentum around their organization’s goals
- Avoid common leadership and relationship pitfalls that can slow progress or undermine trust
You’ll Leave With:
- Practical tools for stakeholder and relationship mapping
- Strategies for building stronger, more productive partnerships
- Insights from experienced leaders who have successfully navigated complex collaborations
- Connections with peers facing similar challenges
- A clearer understanding of how to prevent important work from getting stuck
Have questions about the event or how to get involved? Email [email protected].
Agenda
1:00pm Registration & Welcome
1:45pm Technical Skill Session
3:30pm Leadership Workshop
5:30pm Networking Reception
6:30pm Keynote & Dinner Discussions
Key Topics:
- Strategic Partnerships & Negotiation: Building Relationships that Create Impact
- Leading Across Power Dynamics
- Relationships that Change What’s Possible
Registration Information
Event Details:
Wednesday, November 4, 2026
1:00-8:00pm ET
David Rubenstein Treehouse, Harvard University
Wendesday, December 2, 2026
1:00pm – 8:00pm PT
Travere Therapeutics, San Diego
Cost: $150
Your registration for this in-person event includes the following:
- Event Sessions: Access to keynotes, general sessions & interactive workshops
- Meals: Enjoy snacks and dinner
- Networking Opportunities: Ample opportunities to connect
We recommend attending the event that is closest to you, agenda and topics will be consistent throughout the two events
November 4,2026 | Boston Speakers
Alison Lawton
Chair, Dianthus Therapeutics
Alison Lawton
Chair, Dianthus Therapeutics
Alison is Chair of the Board at Dianthus & TrimTech Therapeutics and a seasoned biotech executive with deep experience in orphan disease drug development. Over more than 20 years at Genzyme, she advanced therapies for underserved communities by leading global regulatory, policy, market access, and commercial teams. She later served as COO of X4 Pharma & Aura Biosciences and then as CEO of the publicly traded Kaleido Biosciences, all of which were pioneering new therapies for orphan diseases.
Charlene Son Rigby
CEO, Global Genes
Charlene Son Rigby
CEO, Global Genes
Charlene Son Rigby has spent her career building organizations at the intersection of data, technology, and life sciences. She currently serves as CEO of Global Genes. She was previously Chief Business Officer at Fabric Genomics and held executive roles at enterprise software and genomics companies, including Oracle and Doubletwist. She started her career in neuroscience research at Roche. When Charlene’s daughter was diagnosed with a rare genetic disease, she co-founded the STXBP1 Foundation. Charlene’s unplanned connection between her personal life and profession has helped push forward the search for a cure for her daughter and kids like her.
Erica Mawby-Roche
Managing Director, Programs and Partnerships, Termeer Institute
Masako Nakamura
President and Chief Operating Officer, AlphaRose
Michèle Barnett Berg
Head of Leadership Design and Learning, Termeer Institute
Pauline Jen Ryan
CEO and Director, Atropos Therapeutics
Richard Novak Ph.D.
Co-Founder and CEO, Unravel Biosciences
December 2,2026 | San Diego Speakers
Charlene Son Rigby
CEO, Global Genes
Charlene Son Rigby
CEO, Global Genes
Charlene Son Rigby has spent her career building organizations at the intersection of data, technology, and life sciences. She currently serves as CEO of Global Genes. She was previously Chief Business Officer at Fabric Genomics and held executive roles at enterprise software and genomics companies, including Oracle and Doubletwist. She started her career in neuroscience research at Roche. When Charlene’s daughter was diagnosed with a rare genetic disease, she co-founded the STXBP1 Foundation. Charlene’s unplanned connection between her personal life and profession has helped push forward the search for a cure for her daughter and kids like her.
Erica Mawby-Roche
Managing Director, Programs and Partnerships, Termeer Institute
Michèle Barnett Berg
Head of Leadership Design and Learning, Termeer Institute
Sheena McGowan Ph.D.
Co-Founder and CEO, Scudo Biosciences
Steve Rodems, Ph.D.
Vice President, Research & Nonclinical Development, Travere Therapeutics
Steve Rodems, Ph.D.
Vice President, Research & Nonclinical Development, Travere Therapeutics
Steve Rodems, PhD, is Vice President of Research and Nonclinical Development at Travere Therapeutics, with over 25 years of experience in rare disease drug discovery and development. He leads preclinical research, nonclinical development, and pipeline expansion. Steve believes patients are partners in drug development and that building trusted relationships with patient communities early leads to better medicines faster.
Troy Wilson Ph.D., J.D.
Co-Founder and CEO, Kura Oncology
The 2026 Leadership Labs
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