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  1. Learn 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

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

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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.

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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.

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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.

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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.

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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.

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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.

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FDA Patient Listening Sessions: Community Perspectives

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

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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.

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FDA Patient Listening Sessions: Community Perspectives

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

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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 [email protected].

 
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