Michigan Patient Advocacy Forum
Join Us Virtually
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.
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
Agenda
| May 20 | |
| 1:00 PM - 1:05 PM | Welcome 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 access, and ensure patient perspectives help shape the future of healthcare. |
| 1:05 PM - 1:55 PM | Patient Voices: Personal Journeys, Lasting Impact 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. |
| 2:00 PM - 2:50 PM | Patients Can’t Wait: Rewriting the Playbook for Developing New Therapies 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. |
| 2:55 PM - 3:40 PM | The Equity Imperative: Ensuring Every Patient Counts 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 for underserved communities. 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. |
| 3:50 PM - 4:40 PM | Stronger Together: Uniting Michigan’s Rare Disease Community This session highlights Michigan’s growing network of rare disease organizations, including the Michigan Rare Disease Council, Michigan Rare 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. |
| 4:40 PM - 5:00 PM | Call to Action - Closing 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. |
- Chrisy Klavitter, Patient Advocate
- Becky Strong, International Pemphigus Pemphigoid Foundation
- Emily Schaller, Rock CF Foundation
- Carlie Monnier, N2RF1 Foundation
- Hon. Jason Morgan, Michigan House of Representatives
- Hon. Mike McFall, Michigan House of Representatives
- Jeffrey Coller, PhD, Johns Hopkins University
- Yvette Dinkins, Genentech
- Stephen Rapundalo, PhD, MichBio
- Kira Mann, MitoAction
- Jenifer Ngo Waldrop, Rare Disease Diversity Coalition
- Jennifer Shumsky, JLS Consulting
- Laura Bonnell, The Bonnell Foundation
- Dan Vogt, PhD, Rare Disease Network
- Caleb Bupp, MD, FACMG, Rare Disease Network
- Leslie Baldwin, Michigan Rare
- Vanessa Greene, Grand Rapids African American Institute
- Michelle Pawloski, Patient Advocate
| Price | |
|---|---|
|
Patient Advocate
|
FREE |
|
Government/Legislators
|
FREE |
| Price | |
|---|---|
|
Academic/Clinical
|
FREE |
|
Industry
|
$35.00 |
| Price | |
|---|---|
|
Academic/Clinical - Nonmember
|
FREE |
|
Industry - Nonmember
|
$75.00 |
This virtual event unites Michigan’s patient advocacy community, policymakers, and life sciences leaders to advance patient-centric innovation. Participants will explore best practices and collaborations that elevate the patient voice from discovery through commercialization.
Questions on sponsorship, exhibitor or marketing opportunities, please get in touch with Emily Brockman or Jamie Krajny.
Presented By:
SPONSORED BY:
