State Representative
Michigan House Representatives
2026 Michigan Patient Advocacy Forum
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Wednesday, May 20, 2026
Virtual Event
A Better Future for Rare Disease
Connecting Voices, Ideas and Action
The Michigan Patient Advocacy Forum is a virtual event hosted by MichBio that brings together Michigan’s patient advocacy community, bioscience industry leaders, policymakers, and thought leaders to share experiences and integrate the patient voice from discovery to delivery. It fosters collaboration, empowers advocates, and deepens understanding of patient needs.
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About the Forum
This interactive forum highlights best practices, emerging approaches, and evolving perspectives on how the bioscience industry, regulators, and other stakeholders are integrating the patient voice across the full continuum—from early discovery to delivery of care.
Through shared insights and discussion, the Forum aims to:
- Empower patient advocacy stakeholders
- Foster collaboration across sectors
- Elevate advocacy priorities
- Deepen understanding of patients’ needs, experiences, and challenges
WHO SHOULD ATTEND?
The Patient Advocacy Forum is designed to provide an avenue for engagement whose roles are motivated by patient stories.
- Patients and patient advocates
- Patient advocacy organizations
- Bio-industry leaders
- Government affairs and policy professionals
- Lawmakers and policy staff
Meet Our Speakers
JeffrEy Coller, Phd
Bloomberg Distinguished Professor of RNA Biology and Therapeutics
Johns Hopkins University
Becky Strong
Outreach Director
International Pemphigus Pemphigoid Foundation
Chrisy Klavitter
Patient Advocate
Emily Schaller
Founder/Executive Director & Patient Advocate
Rock CF Foundation
Leslie Baldwin
President and CEO
Michigan Rare
Laura Bonnell
CEO
The Bonnell Foundation
Hon. Jason Morgan
State Representative
Michigan House Representatives
Kira Mann
CEO
MitoAction
Yvette Dinkins
Director, Issue Advocacy and Alliances, External Affairs
Genentech
Jenifer Ngo Waldrop
CEO
Rare Disease Diversity Coalition
Dan Vogt, PhD
Assistant Professor, Dept. of Pediatrics and Human Development, College of Human Medicine, MSU
Rare Disease Network
Caleb Bupp, MD, FACMG
Co-Founder, Division Chief, Medical Genetics & Genomics, Corewell Health
Rare Disease Network
Carlie Monnier
Co-Founder and Patient Advocate
N2RF1 Foundation
Jennifer Shumsky
Director, Advocacy & Engagement
Canary Advisors
Vanessa Greene
CEO
Grand Rapids African American Health Institute
Michelle Pawloski
Patient Advocate
Stephen Rapundalo, PhD
President and CEO
MichBio
Conference Agenda
Welcome
1:00 PM
MichBio serves as a vital bridge between the life sciences industry - from discovery, innovation, and development - and the patients it aims to serve. We connect industry, researchers, and advocates to accelerate progress, improve accessm and ensure patient perspectives help shape the future of healthcare.
Speaker: Stephen Rapundalo, PhD, MichBio
Patient Voices: Personal Journeys, Lasting Impact
1:05 - 1:55 PM
Patients and caregivers share candid stories of navigating diagnosis, treatment, and the barriers they've faced—perspectives data alone can't capture. This opening session highlights how lived experiences shape meaningful advocacy and engagement with industry, regulators, and policymakers to inform better decisions and real-world impact.
Speakers:
Chrisy Klavitter, Patient Advocate
Carlie Monnier, NR2F1 Foundation
Michelle Pawloski, Patient Advocate
Emily Schaller, Rock CF Foundation
Becky Strong, International Pemphigus Pemphigod Foundation
Patients Can't Wait: Rewriting the Playbook for Developing New Therapies
2:00 - 2:50 PM
Join Dr. Jeff Coller for a fireside chat on rethinking how therapies are developed—especially for rare diseases. Inspired by his recent New York Times opinion piece, this session explores collaborative, patient-centered models that challenge traditional R&D and accelerate real-world impact. Learn how scientists, advocates, and institutions can work together to reshape drug development.
Speakers:
Stephen Rapundalo, PhD, MichBio
Jeffrey Coller, PhD, Johns Hopkins University
The Equity Imperative: Ensuring Every Patient Counts
2:55 - 3:40 PM
Health equity remains one of the most urgent - and solvable - challenges in healthcare. This session will explore how systemic barriers limit access to care, clinical trials, and new therapies. Panelists will discuss actionable strategies to embed equity across the healthcare and drug development continuum. Learn how cross-sector collaboration can drive more inclusive innovation and better outcomes for all patients.
Speakers:
Yvette Dinkins, Genentech
Vanessa Greene, Grand Rapids African American Health Institute
Kira Mann, MitoAction
Jenifer Ngo Waldrop, Rare Disease Diversity Coalition
Jennifer Shumsky, Canary Advisors
Stronger Together: Uniting Michigan's rare Disease Community
3:50 - 4:40 PM
This session highlights Michigan's growing network of rare disease organizations, including the Michigan Rare Disease Coalition and Rare Disease Network. Leaders will share how they support patients and families, influence policy, and collaborate to address unmet needs—raising awareness, strengthening advocacy, and improving access to care and innovation.
Speakers:
Leslie Baldwin, Michigan Rare
Laura Bonnell, The Bonnell Foundation
Caleb Bupp, MD, FACMG, Rare Disease Network
Dan Vogt, PhD, Rare Disease Network
Call to Action - Closing
4:40 - 5:00 PM
This closing session will reflect on key themes from the Forum, highlighting how patient voices can drive meaningful change across care, research, and policy. It will also provide a brief update on current and emerging Michigan legislative initiatives impacting rare disease patients, with a focus on opportunities for advocacy and engagement.
Speaker:
Hon. Jason Morgan, Michigan House of Representatives
Hon. Mike McFall, Michigan House of Representatives
Stephen Rapundalo, PhD, MichBio
