2026 Michigan Patient Advocacy Forum
REGISTER TODAY
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.
LEARN MORE & REGISTER
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
Molly Zink
Patient Advocate
Emily Schaller
Founder/Executive Director & Patient Advocate
Rock CF Foundation
Roberta Smith, CNMT
President
Alagille Foundation
Laura Bonnell
CEO
The Bonnell Foundation
Dominic Smith, MSA
Manager, Public Health Genomics Section, Division of Epidemiology & Genomics
DHHS of Michigan
Kira Mann
CEO
MitoAction
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.
Moderator:
Becky Strong, International Pemphigus Pemphigod Foundation
Panelists:
Molly Zink, Patient Advocate
Emily Schaller, Rock CF Foundation
Roberta Smith, Alagille Foundation
Stronger Together: Uniting Michigan's rare Disease Community
2:05 - 2:55 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.
Moderator:
Laura Bonnell, The Bonnell Foundation
Panelists:
Dominic Smith, MSA, Department of Health and Human Services, State of Michigan
The Equity Imperative: Ensuring Every Patient Counts
3:00 - 3:50 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.
Moderator:
Kira Mann, MitoAction
Patients Can't Wait: Rewriting the Playbook for Developing New Therapies
3:55 - 4:40 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.
Moderator:
Stephen Rapundalo, PhD, MichBio
Speaker:
Jeffrey Coller, PhD, Johns Hopkins University
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:
Stephen Rapundalo, PhD, MichBio
