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 In this section:

                Learn About FDA Patient Engagement

Learn About FDA Patient Engagement

                        About the FDA Patient Representative Program
          When a Patient Speaks: Testimonials from FDA Patient Representatives
          How to Apply to the FDA Patient Representative Program
          FDA Patient Engagement Overview*
          FDA Patient Listening Sessions
          Patients Ask FDA
          Patients Matter Video Series
          Patient Engagement Collaborative
          Patient Engagement Cluster
          About the FDA and How You Can Get Involved


                        FDA Patient Engagement Opportunities Home
          For Patients
          Learn About FDA Patient Engagement
          Patients Matter Video SeriesLearn About FDA Patient Engagement Patients Matter Video Series
  
  	
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The Patients Matter Video Series is a series of short videos developed by FDA’s Office of Patient Affairs to teach patients and other stakeholders about FDA and patient engagement efforts. The video series is intended to educate patients and other stakeholders about FDA, encourage them to share their perspectives on living with a disease or condition, and provide information about how to contact the Agency.



Patients Matter
	Giving Patients A Seat at the Table
	FDA's Office of Orphan Products Development
	How Rare Disease Patients Can Move Scientific Discovery Forward
	What is Expanded Access?
	What is an FDA Patient Listening Session?
	FDA Patient Listening Sessions: Community Perspectives **(NEW)**

**Patients Matter**

Learn about how FDA wants to hear from and engage with patients, caregivers, and patient advocates in this introduction to the Patients Matter video seriesWatch video.



**Patients Matter: Giving Patients A Seat at the Table**

Learn about five different kinds of meetings, forums, and committees at which patients, caregivers, and advocates are invited to sit at the table with FDA and share their ideas, experiences, and concerns.Watch video.



**Patients Matter: FDA's Office of Orphan Products Development Grants Program**

Learn about how FDA is administering funding to support innovative clinical trial methods and research for the millions of people with rare diseases through the Orphan Products and Natural History Grants Programs. These grants are open to foreign or domestic, public or private, for-profit or nonprofit entities, including patient advocacy groups, academicians, and industry.Watch video.



**Patients Matter: How Rare Disease Patients Can Move Scientific Discovery Forward**

Learn about how patients, caregivers, and advocates can get involved in natural history studies and clinical trials to help scientists develop treatments for patients with rare diseases.Watch video.



**Patients Matter: What is Expanded Access?**

Learn about FDA’s Expanded Access Program, when Expanded Access could be an option, the process for requesting Expanded Access and hear a family’s experience with the Program.Watch video.

Resources for Patients:
FDA’s Expanded Access patient webpage
Connect with FDA regarding the Expanded Access Program
Resources for Health Providers:
FDA’s Expanded Access physician webpage
Assistance with an oncology Expanded Access request



**Patients Matter: What is an FDA Patient Listening Session?**

Learn about why you should request a session and what happens during an FDA Patient Listening Session. FDA Patient Listening Sessions give patients, caregivers and patient organizations an opportunity to connect directly with the FDA about their health condition and help us understand what is most important including the physical and emotional burdens.Watch video.



FDA Patient Listening Sessions: Community Perspectives

Patients, caregivers and advocates describe their experiences with the FDA Patient Listening Session program.



**FDA Patient Listening Sessions: Community Perspectives**

Patients, caregivers and advocates describe their experiences with the FDA Patient Listening Session program.Watch video.




**FDA Patient Listening Sessions: Community Perspectives**

Patients, caregivers and advocates explore ways the FDA Patient Listening Session program has benefited their communities.Watch video.




**FDA Patient Listening Sessions: Community Perspectives**

Patients, caregivers and advocates discuss why other patient communities should get involved with the FDA Patient Listening Session program.Watch video.




**FDA Patient Listening Sessions: Community Perspectives**

Patients, caregivers and advocates discuss why communities should consider requesting an FDA Patient Listening Session.Watch video.


**FDA Patient Listening Sessions: National Organization for Rare Disorders (NORD)**

Debbie Drell, Director of Membership at the National Organization for Rare Disorders (NORD) describes the importance FDA Patient Listening Sessions and NORD’s role in the program.

Watch Video


**FDA Patient Listening Sessions: The Reagan-Udall Foundation for the FDA**

Alec Halsne of the Reagan-Udall Foundation for the FDA describes the importance FDA Patient Listening Sessions and the Reagan-Udall Foundation for the FDA’s role in the program.

Watch Video


FDA Patient Listening Sessions: FDA Staff Reflections

FDA Staff reflect and provide their insights from the FDA Patient Listening Session program.

**FDA Patient Listening Sessions: FDA Staff Reflections – Melanie Blank**

Melanie Blank from FDA’s Center for Biologics Evaluation and Research (CBER) outlines how FDA Patient Listening Sessions can benefit patient communities.

Watch Video


**FDA Patient Listening Sessions: FDA Staff Reflections – Lewis Fermaglich**

Lewis Fermaglich from FDA’s Office of Orphan Products Development describes an impact of the FDA Patient Listening Session program.

Watch Video


**FDA Patient Listening Sessions: FDA Staff Reflections – Erica Lyons**

Erica Lyons from FDA’s the Center for Drug Evaluation and Research (CDER) shares an example of how the information she heard during an FDA Patient Listening Session informed her work.

Watch Video


**FDA Patient Listening Sessions: FDA Staff Reflections – Anne Rowzee**

Anne Rowzee from FDA’s Center for Biologics Evaluation and Research (CBER) shares how the FDA Patient Listening Session program provides insight into the work she does at FDA.

Watch Video


**FDA Patient Listening Sessions: FDA Staff Reflections – Julienne Vaillancourt**

Julienne Vaillancourt from FDA’s Center for Biologics Evaluation and Research (CBER) explains how FDA Patient Listening Sessions have informed her work at FDA.

Watch Video


When a Patient Speaks: Testimonials from FDA Patient Representatives

Text saying When a Patient Speaks with a photo of diverse patients in the background.
FDA Patient Representatives continue to make important contributions to the agency as medical products are regulated. It’s through the FDA Patient Representative Program® that both patients and caregivers are able to demonstrate their strengths as advocates and ambassadors to their communities. "When a Patient Speaks" is a series of short videos where experienced FDA Patient Representatives share what it means to serve in their unique role, the impact that it’s had on their lives, the lessons learned as they’ve served, and more.

*For more information about how you can engage with FDA, contact FDA’s Office of Patient Affairs at**PatientAffairs@fda.gov**.*

                                                                                  Content current as of:
      10/10/2023
              
              
Regulated Product(s)
		 Medical Devices
			  			     			  			     TobaccoTopic(s)
			  Public AwarenessLearn About FDA Patient Engagement

          
                        About the FDA Patient Representative Program
          When a Patient Speaks: Testimonials from FDA Patient Representatives
          How to Apply to the FDA Patient Representative Program
          FDA Patient Engagement Overview*
          FDA Patient Listening Sessions
          Patients Ask FDA
          Patients Matter Video Series
          Patient Engagement Collaborative
          Patient Engagement Cluster
          About the FDA and How You Can Get Involved


                        FDA Patient Engagement Opportunities
 
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