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What Is It Like to Live With and Manage Asthma in Childhood? Share Your Story With the FDA

 

Update for Oct. 8, 2021:

Did you miss the live stream of the PFDD meeting on childhood asthma? We are also still collecting stories about experiences living with and managing food allergy. See below for more information below on how to watch the recording and submit your comments .


To bring the voice of patients and caregivers impacted by asthma in childhood to the forefront of drug development and research, the Allergy & Asthma Network, American Lung Association, American Partnership for Eosinophilic Disorders, and Asthma and Allergy Foundation of America (AAFA) are collaborating on a new program – Little Airways, Big Voices.

How Can I Get Involved?

Anyone who has experience living with and/or managing asthma in childhood can watch the recording of the Little Airways, Big Voices externally-led PFDD meeting that was held on Sept. 20, 2021.

You can also still add your voice to this program.

  • Take a brief survey to help us gather insights on the burden of childhood asthma, treatment options, and more. As a thank you for taking the survey, you can enter a drawing to win a $50 Amazon gift card.

  • You can also share your experiences living with and managing asthma in childhood by sending in written comments. We are accepting comments at littleairwaysbigvoices.org through Oct. 20, 2021.

SUBMIT YOUR COMMENTS


Voice of the Patient Report

All of the information gathered from the externally-led PFDD meeting, survey, and written comments will be analyzed and summarized in a Voice of the Patient report. The report will help inform the Food and Drug Administration (FDA), as well as researchers and drug development companies, on what is important to people living with and managing asthma in childhood.

We plan to share the report in 2022.

What Is a Patient-Focused Drug Development (PFDD) Meeting?

The FDA created the PFDD initiative to collect patient insights on specific diseases, including their impact on daily life and treatment options. PFDD meetings are designed to connect patients and caregivers directly with the FDA, as well as researchers and drug developers. Some PFDD meetings are led by the FDA and others are externally-led by patient advocacy organizations. The meetings and resulting Voice of the Patient reports help the FDA see what is important to patients. This includes what people want treatment to look like (apart from a cure).

The goal of the Little Airways, Big Voices externally-led PFDD meeting is to gather patient and caregiver insights about living with and managing asthma in childhood. It will inform new treatment strategies, get families involved in drug development, and improve health outcomes.

AAFA also co-hosted a webinar to launch Little Airways, Big Voices. The externally-led PFDD meeting organizers, along with Larry Bauer, Senior Regulatory Drug Expert with Hyman, Phelps & McNamara, shared background information about PFDD meetings and ways families can get involved.

Watch on YouTube

Make an Impact

To learn more and add your voice to the Little Airways, Big Voices PFDD project, visit littleairwaysbigvoices.org.

The Asthma and Allergy Foundation of America (AAFA) is the largest and oldest nonprofit patient organization dedicated to asthma and allergies. Our online community includes public blogs. To post a comment, you will need to register or sign in.

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