This page includes opportunities for surveys, interviews, focus groups, and storytelling.
Formula and Medical Foods Survey
Following a focus group that Mead Johnson Nutrition hosted for healthcare providers at APFED’s June 2025 Conference in North Carolina, they have expanded this effort to include patients and families. This short survey will ask about your experiences using specialized nutrition therapies — such as amino acid or elemental formulas, extensively hydrolyzed formulas, and elimination diets — for managing food allergies, eosinophilic gastrointestinal disorders, and related conditions.
Your insights will help guide the development of improved education, advocacy, and tools to support families and clinicians in providing effective, evidence-based nutrition care.
Click here to begin the survey.
Share Your EoE Experience to Educate Healthcare Providers
Posted Nov 4, 2025
Your lived experience with eosinophilic esophagitis can make a powerful difference in how the condition is understood and treated. APFED is partnering with Medscape on an important educational initiative, and we need your voice.
We’re seeking patients and caregivers living with EoE to participate in a 15-20 minute online survey to gather real-world experiences with EoE symptoms, diagnosis, treatment, and interactions with your healthcare team.
Click here to begin the survey.
Decision Point Research – Paid Study – Online Survey
Decision Point Research is currently conducting a paid survey focused on individuals living with EoE (Eosinophilic Esophagitis) and non-medical caregivers of individuals with EoE.
The goal of the survey is to gain a deeper understanding of the experiences and impact of living with EoE (Eosinophilic Esophagitis) from either a personal perspective or that of a caregiver. Your insights will contribute to improving care for individuals affected by this gastrointestinal disease. The survey takes approximately 30 minutes to complete. As a token of appreciation for your time, you will receive a $50 payment after completing the survey. A 5-minute pre-qualifying phone screen will be conducted before sending you the survey link.
Patients should be aged 18 or older, and caregivers (non-medical) should be looking after a patient under the age of 18. Participants must reside in Canada.
Incentive: Payable by e-Transfer or a cheque in the mail by Decision Point Research.
Your participation will be anonymous to protect your privacy. Please contact Aaron Elliot to participate in the study. Phone 437-317-8175. Email Aaron Elliott aaron@decisionpointresearch.ca
Decision Point Research is an independent market research firm in Toronto www.decisionpointresearch.ca
Share Your Story for a WebMD Feature on Living Well with EoE
Are you living with eosinophilic esophagitis (EoE) and interested in encouraging others who are newly diagnosed? An independent journalist writing for WebMD is looking to feature three individuals living well with EoE in an upcoming printed guide designed to support people who are new to the condition. In particular, they would love to include a male perspective to ensure diverse representation of experiences.
Each participant will be highlighted with:
-
A photo of you “in action” (doing something you enjoy)
-
A short quote offering encouragement, advice, or lessons learned from living with EoE
If you’d like to share your experience—or know someone who might—please contact Sonya Collins at sonya.collins@gmail.com.
Insurance Coverage of EoE Medicine
We would like to hear from those in the United States who have had challenges with insurance coverage of an FDA-approved medication indicated to treat EoE (eosinophilic esophagitis). If you live in the U.S. and have been prescribed one of these medications to treat EoE, we’d be grateful if you answered a few questions to help us advocate for better coverage.
EGPA Research Study Opportunity
Fieldwork is helping to find participants for upcoming research related to Eosinophilic Granulomatosis with Polyangiitis (EGPA). This research study is being conducted to evaluate the usability of different injector devices that could be used in the treatment of EGPA.
The study will consist of one visit to a research facility (locations will be within the United States and specific states will be selected based on where qualified participants reside). During the session, participants will be asked to simulate the use of a prototype injector device on a pad and to review supplied informational materials. Participants will be asked a few questions about their experience and preferences as well as asked to identify any areas of difficulty or anything they feel could be improved. You will not be asked to inject yourself and there is no medication used in this study.
This research session will last approximately 60 minutes, in-person and qualified participants will receive $350 for their valued feedback.
We are currently conducting a preliminary assessment of US cities to determine where we will be hosting this research based on where qualified candidates reside. If your city is selected and you meet the preliminary criteria, we will be in touch with additional information once the study is scheduled.
If you’re interested in potentially participating, please visit https://opinari.fieldwork.com/surveys/EP—1007
Questions may be sent to Kate Albert at katea@fieldwork.com
Share Your Opinion and Benefit APFED through Rare Patient Voice
Patients (14 and older) and caregivers (family, friends) of any disability, disorder, syndrome, disease or condition are provided an opportunity to voice opinions through surveys and interviews to improve medical products and services. Join the Rare Patient Voice community online and earn a $5 Dunkin Donuts, Starbucks or CVS gift card. APFED will also receive $5 for each qualified signup, which will benefit our HOPE on the Horizon Research Program. Your information is confidential, and your email/name is never shared. You may be invited to participate in surveys from time to time, where you will earn cash. Learn more and join here: American Partnership for Eosinophilic Disorders (APFED)