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Food Allergy Awareness Kit

Voice of the Patient Report: Food Allergies

Treatment priorities of people living with food allergies are at the core of a special initiative called the Food Allergy Collaborative (FAC). As part of the collaboration, the FAC hosted an externally-led patient-focused drug development (PFDD) meeting on Sept. 9, 2021. People with food allergies and caregivers shared their experiences with the Food and Drug Administration (FDA) and other groups involved in treatment research and development.

The PFDD gave the food allergy community a chance to speak directly to FDA staff, representatives from pharmaceutical and medical device companies, and other key stakeholders. This opportunity allows people with food allergies to inform and shape development of drugs and medical devices designed to treat food allergy in children and adults.

As a result of the PFDD, the FAC produced the Voice of the Patient Report: Food Allergies Download PDF.

“Living with multiple allergies is stressful, but I’m hopeful. I ask the FDA to consider more research in allergy prevention and treatments that address the whole person and the relationship between food allergies and other allergic diseases.” – Dawn G., patient

Voice of the Patient Report: Food Allergies

The resulting Voice of the Patient Report: Food Allergies will inform new treatment strategies, effectively engage families in drug development, and improve health outcomes. This initiative was the first of its kind for food allergy. Your voice and perspectives are essential for us to elevate the needs of individuals and families managing food allergies.

During the PFDD, several people with food allergies and caregivers of children with food allergies shared their experiences. They talked about:

  • Living with food allergy, symptoms, health effects, and daily impacts
  • Perspectives on prevention and treatment
  • The financial burden of managing food allergies
  • How important it is to self-advocate and educate other people
  • How some activities are difficult or not feasible because of food allergies
  • Mental and emotional impacts of food allergies
  • Confusing food ingredient labels
  • The need for more ways to diagnose food allergies
  • The desire for more treatment options
  • Easier ways to treat anaphylaxis

The report captured the patient perspectives shared at the PFDD, along with detail about the meeting. The FAC is sharing the report with key stakeholders to raise awareness of the needs of people managing food allergies.

Watch the video of the meeting on YouTube

The Food Allergy Collaborative

Launched in 2019, the FAC is an alliance of advocacy organizations, those living with food allergies, and industry partners who are uniting to advance effective, patient-centered initiatives in food allergy awareness, research, and care.
The Food Allergy Collaborative includes:

  • AllergyStrong
  • Allergy & Asthma Network
  • Asthma and Allergy Foundation of America (AAFA)*
  • Elijah-Alavi Foundation Inc.
  • Food Allergy & Anaphylaxis Connection Team (FAACT)
  • Food Allergy Research & Education (FARE)
  • Food Equity Initiative (FEI)

*Kids with Food Allergies is the food allergy division of AAFA.

Why Patient-Focused Drug Development Meetings Are Important (Video)

Want to learn more about why PFDD meetings are important for the future of food allergy management and treatment? Watch the recording from our recent webinar called “Food Allergy Voice of the Patient Process.”

The webinar below is your opportunity to learn more about PFDD meetings and why they are important for the food allergy community. You will learn about the project and how you can get involved.

Watch on YouTube

What Is a Voice of the Patient Report?

The FDA established 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 identify what is important to patients. This includes what people want treatment to look like (apart from a cure).