The Patients Matter Video Series is a series of short videos developed by FDA’s Patient Affairs Staff 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.
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
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.
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.
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.
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.
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
Listen to Dr. Amy Abernethy, FDA Principal Deputy Commissioner, reflect on her own experiences incorporating the patient voice into decisions about new and developing therapies and hear how FDA plans to continue building relationships with the patient community and to strengthen its engagement programs.
When a Patient Speaks: Testimonials from FDA Patient Representatives
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 Patient Affairs Staff at PatientAffairs@fda.gov.