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The Premier Forum For Advocacy Organizations to Advance Scientific Discovery and Patient Care

October 28-29, 2026
Hilton Arlington, Arlington, VA

 

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The first conference to teach patient advocacy organizations how to build effective programs and collaborations with industry and federal agencies to accelerate therapeutic development

There are more than 22,000 disease-focused nonprofit organizations in the United States. These organizations have ground-level, continuous contact with millions of people living with disease or medical disorders, and they are desperate for cures and treatments.

Imagine a future where disease-focused nonprofit professionals are equipped with the tools and knowledge to become pivotal players in groundbreaking research partnerships.

That future starts at Foundations. Over two days in Arlington, you’ll gain the frameworks, relationships, and practical tools to strengthen your organization’s role in the full therapeutic ecosystem.

Matters

Why It Matters

Therapeutic development is increasingly dependent on strong patient-centered partnerships. Patient Advocacy Organizations can dramatically reduce trial risk, improve recruitment, and strengthen real-world evidence by:

  • Mobilizing patient communities for clinical trial enrollment
  • Supporting pediatric and adult study participation
  • Providing natural history data and lived-experience insights
  • Reducing operational uncertainty for sponsors
  • Enhancing trial design through community-informed approaches
Meet

Is It For You?

Foundations brings together the full therapeutic ecosystem. Whether you lead a Patient Advocacy organization, work inside a pharmaceutical or biotech company, represent a federal agency, or design clinical trials — this conference was built for you.

You’ll get the most out of Foundations if…

  • You lead or work at a Patient Advocacy Organization and want to create or expand your existing support of medical research, your work with pharmaceutical and biotech, and your Advocacy initiatives
  • You work in pharma or biotech and want to build authentic, productive nonprofit partnerships
  • You represent a federal agency working to advance patient-centered therapeutic development
  • You design or manage clinical trials and want to learn to work with Patient Advocacy Organizations
  • You’re newer to the PAO ecosystem and need a clear, practical roadmap to get started
Learning

Designed for the Entire Advocacy Ecosystem

Built around the real-world needs of advocacy organizations, the Foundations agenda delivers practical, actionable insights for every stakeholder in the ecosystem—from patient advocacy leaders and nonprofit teams to researchers, medtech partners, and policymakers.

From understanding the research pipeline and building research-ready organizations, to forming high-impact partnerships and navigating NIH/FDA engagement, each session is intentionally designed to meet attendees where they are and help them drive meaningful scientific progress.

Our Chairperson
Allison Feldman
Allison Feldman

CEO

Speaking Faculty
Jean Campbell
Jean Campbell

Co-Founder and Board Director

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Keith Fargo
Keith N. Fargo, PhD

Director of Scientific Initiatives

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Deborah Fowler
Deborah Fowler

President and Founder

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Eric Gascho
Eric Gascho

Executive Director

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Raymond Puerini_Milken Institute
Raymond Puerini

Director

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Erika Sward
Erika Sward

Chief Advocacy Officer

US Against Alzheimers

 

Program Agenda: Day One


October 28, 2026
8:00 AM
Breakfast and Registration
9:00 AM

Chairperson's Opening Remarks

Allison Feldman

Allison Feldman

CEO

LEWY BODY DEMENTIA ASSOCIATION

9:10 AM
Keynote
Powering Progress: How Patient Advocacy Organizations Fuel Scientific Progress    
  • Landscape of patient-facing nonprofit sector
  • The value that PAOs bring to MedTech, researchers and government
  • Ecosystem of PAOs, MedTech, researchers, and government
9:50 AM

Partnering with Purpose: Navigating Industry Collaboration and Building Smart, Mission-Driven Partnerships 

  • Meeting the mission: how work in the MedTech/federal/PAO ecosystem improves lives
  • Assessing readiness
  • Seeking the right fit in MedTech partners
  • Building your PAO’s infrastructure and network
 
10:35 AM

Inside the Research Pipeline: Where Patient Advocacy Organizations Make a Difference

  • Phases of medical studies
  • Discovery to after-market: the roadmap and where PAO’s come into play at each phase
  • The current landscape and impact on Medtech and PAO’s
  • Market access hurdles
11:15 AM
Networking Break
11:45 AM

Partnerships that Deliver: Real Stories, Real Impact                

  • Life-impacting outcomes of Medtech/PAO partnerships
  • What makes a successful partnership?
  • Communication: sharing your progress and success
  • When things don’t go as planned: Causes of misalignment, managing expectations of your community
12:30 PM
Networking Lunch
1:30 PM

Building Research Powerhouses: How Research Centers of Excellence Programs Accelerate Discovery and Improve Care       

  • Models of RCOEs
  • What makes an RCOE program valuable to MedTech
  • How RCOE programs catalyze research and benefit your community
2:15 PM
Interactive Session
Becoming Research-Ready: An Interactive Blueprint for Success
3:30 PM
Networking Break
4:00 PM

Value-Driven Programs and Making the Case for Support        

  • Patient registries and Living history studies
  • Engaging funders: the case for support
  • Navigating private foundations    
5:00 PM
Networking Reception
6:00 PM
End of Day One

Program Agenda: Day Two


October 29, 2026
8:00 AM
Networking Breakfast
9:00 AM

Chairpersons Recap and Opening Remarks

Allison Feldman

Allison Feldman

CEO

LEWY BODY DEMENTIA ASSOCIATION

9:10 AM

From Policy to Patients: Engaging Effectively With the Federal System

  • NIH 101- what is it/mission/structure/IC’s/who runs it/decision-makers and $

  • The current landscape and how it impacts research

  • How to engage with your IC (institutes and centers)   

  • FDA 101

  • Patient-focused drug development meetings: what they are and why they matter

9:55 AM

Advocacy That Moves Mountains: Turning Passion into Policy

  • Advocacy: what it is, advocacy v. lobbying
  • Determining your organization's advocacy priorities: when to lead, join or follow
  • Working with consultants
  • Creating a volunteer advocacy force; success stories
10:45 AM
Networking Break
11:15 AM
Panel Discussion

The Power of Partnership: Perspectives Across the Ecosystem

  • Researchers and nonprofit - working together success stories, lessons learned
  • Nonprofit and funder - why I chose to invest in this program
  • NIH Program Director(s)/nonprofit - working together, success stories, lessons learned, current climate
  • Patient/caregiver - why this is important
12:15 PM
See You Next Year

Pricing

501(c)3 Patient Organization / Professional Advocate | Academics | Government

Fixed Rate

 

$1095

 

Register

Bio/Pharma | Law Firms | Service Providers | Consultants

Early Bird Rate

Register by 08/28/2026

$2895

$200 Savings

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Advanced Rate

Register by 10/09/2026

$2995

$100 Savings

Register

Standard Rate

Register after 10/09/2026

$3095

 

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Click here to view the cancellation/refund/transfer policy 

Venue

 

Hilton Arlington

950 North Stafford Street

Arlington, VA 22203, US

Please note there is only one official, exclusive housing block for this event. Any other channels for booking reservations are not authorized. If you are contacted by a 3rd party housing company claiming to have a relationship with Momentum Events Group LLC, its event and/or Hilton Arlington; these companies and others like it are not in any way affiliated with us.

hilton-arlington

Why Sponsor?

 

Sponsors gain direct access to the organizations that shape patient communities and influence trial success.

Foundations offers:
 • High-visibility brand placement among mission-driven leaders
 • Direct relationship-building with nonprofits across multiple disease areas
 • Opportunities to co-create sessions, workshops, and case studies
 • Access to a pipeline of potential partners for recruitment, data, and trial readiness
 • Positioning as a champion of patient-centered therapeutic development

Supporting Foundations signals a commitment to accelerating cures through collaboration — not just innovation.

Interested in learning more?

Schedule a meeting with our sponsorship team

Interested in learning more?

Click below to schedule a meeting with our sponsorship team!
 

Frequently Asked Questions

 

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Frequently Asked Questions

 

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