Research Surveys, Interviews, and Perspectives

This page includes opportunities for research surveys, interviews, focus groups, and storytelling.


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.

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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)