This page includes opportunities for research surveys, interviews, focus groups, and storytelling.
Virtual EoE Patient and Family Roundtable, Oct 2024 (date and time TBD)
Posted September 2024
A pharmaceutical company, in partnership with APFED, is seeking to understand the impact of EoE to develop supportive tools and programs, and shape education and awareness initiatives. To incorporate valuable input of the EoE community, we are organizing a virtual EoE Patient and Family Roundtable for EoE patients and caregivers.
APFED is seeking volunteers from the U.S. and beyond to participate in this virtual meeting. We aim to hold this meeting towards the end of October 2024 (time and date to be determined). The meeting will be a maximum 2 hours in length and participation is voluntary.
To be considered for participation, please complete this interest form.
Hypereosinophilic Syndrome Survey
Posted September 2024
We are currently looking for individuals who have HES and experience fatigue to take part in a research interview and earn up to $150.
For complete details, download this flier.
To be considered for participation, please complete this form.
Student Advisory Committee
Posted August 2024
APFED works in partnership with the EGIDPartners.org registry. Teens between the ages of 14-18 who are interested in eosinophilic GI diseases, research, or science in general, join us online Sept 12, 2024 for an info session about a new Student Advisory Committee! that is forming
Applicants may reside anywhere, meetings will be conducted virtually.
The signup form contains the session information.
Seeking People who Participated in CEGIR’s OMEGA Study to Interview
Posted May 2024
The Rare Disease Clinical Research Network is seeking to speak to a patient or family member of someone who has participated in CEGIR’s natural history study (7801: OMEGA) for a blog post they will be producing in May. Examples of insights they are looking to glean are factors that motivated you to participate in the study and what participation has been like. Please contact Dakota Campbell by May 15 at dakota.campbell@cchmc.org. The interview would consist of answering a few short questions via email.
Seeking People with Eosinophilic Esophagitis (EoE) to Share their Story
Posted March 2023
Bristol Myers Squibb™ (BMS) invites members of our community to share their story through their Share to Inspire platform. This platform gives people an opportunity to share their experiences with health conditions or with BMS’s treatment medicines and designed for patients and caregivers to pass on what they’ve learned to others.
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)