Your Experience. Our Future.
Tuesday, March 16, 2027
10:10am – 3:00pm EST (USA)
Virtual Event (Join from anywhere)
Free to attend
About This Meeting
When it comes to understanding multiple system atrophy, the true experts aren’t just in medical clinics or research labs—they are living with it every day.
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Hosted by Mission MSA, this Externally Led Patient-Focused Drug Development (EL-PFDD) meeting is a landmark opportunity for individuals diagnosed with multiple system atrophy, family members, and care partners to connect directly with the U.S. Food and Drug Administration (FDA), clinical researchers, medical product developers,and biotech leaders.
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By sharing the everyday realities of multiple system atrophy—your symptoms, daily challenges, care needs, and treatment goals—you provide critical insights that help decision-makers prioritize what matters most to our community.
Who Should Attend?
Individuals Living with Multiple System Atrophy
Your lived experience is the foundation of this meeting.
Care Partners, Family Members, & Loved Ones
Past and present care partners and loved ones who understand the daily realities of MSA.
Clinicians & Healthcare Professionals
Specialists seeking a deeper understanding of patient-centered outcomes.
Researchers, Industry & FDA Representatives
Key stakeholders eager to learn directly from the community.
Why Your Perspective Matters
For too long, decisions about multiple system atrophy therapies have been informed primarily by clinical charts and medical literature. But a chart cannot measure what multiple system atrophy costs a person day-to-day, nor can it capture the moments of resilience, hope, and determination along the way.
This meeting gives our community the platform to guide the conversation. When you share your experience, you help key audiences:
Identify Unmet Needs
Highlight symptoms and daily challenges that standard medical studies miss.
Shape Clinical Trials
Ensure future studies measure outcomes that genuinely improve daily quality of life.
Put Multiple System Atrophy on the Map
Encourage biotech companies and researchers to prioritize multiple system atrophy therapy development.
Guide Regulatory Oversight
Help the FDA evaluate the real-world benefits and risks of potential new drugs.
Real-World Impact: How EL-PFDD Meetings Drive Change
Your input creates tangible progress. Here is how patient feedback at past EL-PFDD meetings directly reshaped drug development:
Community testimony revealed significant mental health impacts that physicians had previously overlooked. In response, a medical company adjusted its Phase 3 clinical trial design to better reflect patient needs.
Participants explained that their symptoms were episodic rather than constant. This insight prompted FDA reviewers to pivot away from a standard clinical sweat test and focus instead on metrics that reflected real-world quality of life.
Every shared perspective builds the official evidence base needed to advance multiple system atrophy research toward better treatments and a cure.
What to Expect During the Meeting
Designed to be accessible, informative, and interactive, the virtual meeting will feature:
Welcome & Regulatory Opening Remarks
Context from Mission MSA leadership and FDA representatives.
Clinical Overview of Multiple System Atrophy
A brief, clear overview of current knowledge and research.
Panel 1: Daily Impacts & Living with Multiple System Atrophy
Firsthand testimony from individuals and care partners on daily symptoms, functional challenges, and quality of life.
Panel 2: Current Treatments & Future Priorities
Community perspectives on managing symptoms, treatment trade-offs, and hopes for upcoming therapies.
Live Polling & Open Comments
Interactive polling questions throughout the broadcast where all attendees can share input in real time.
How You Can Participate
We offer multiple ways to contribute comfortably using your preferred communication method:
Attend & Vote Live
Participate in live audience polling questions during the webcast from any computer or mobile device.
Submit Pre-Meeting Feedback
Complete our community pre-meeting survey or share written comments online before the event.
Submit Written or Audio Comments
Share short messages during designated open-comment periods.
Can’t join us live on March 16?
You can still make an impact! We will host a dedicated portal on this page to collect written experiences before the event and for a short period following the meeting.
What Happens After the Meeting?
Following the EL-PFDD meeting, an official Voice of the Patient (VOP) report will be prepared that summarizes the patient and caregiver experiences that were shared as part of the meeting. This report will be submitted to FDA and made available on the Mission MSA website as a permanent, public record for anyone interested in learning about patients’ and care givers’ experiences with MSA. FDA staff can reference this report when evaluating potential MSA therapies and when advising drug sponsors on current and future MSA development programs.
Frequently Asked Questions (FAQ)
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No. While individuals living with multiple system atrophy and current care partners are at the heart of this event, we warmly welcome bereaved care partners, family members, loved ones, clinicians, advocates, and researchers to join, listen, and participate.
No. This virtual event is 100% free and accessible from anywhere in the world.
Yes. The complete session recording will be published on our website alongside the final report.
Not at all. Multiple system atrophy impacts people around the globe, and we encourage input from our entire international community.
Yes, we will be providing a portal on this page where you can share your experience. In addition, written comments will be welcome 30 days after the meeting via this webpage.
Get Updates About the EL-PFDD Meeting
Submit the form below to receive direct updates, event details, and early access to official registration and participation opportunities as they become available.
Interested in Sharing Your Experience?
Fill out our quick interest form below. Be sure to also connect with us on social media and subscribe to our emails to stay updated!
Thank You to our Sponsor!
Externally Led Patient-Focused Drug Development (EL-PFDD) Session on Multiple System Atrophy