The birth of a panel – Eosinophilic Esophagitis

We are proud to announce a new patient panel, Eosinophilic Esophagitis. We have 19 patients and 82 caregivers.

Eosinophilic Esophagitis), or EoE, is a chronic immune system disease, only identified recently. Patients have a buildup in the lining of their esophagus, which can cause difficulty swallowing. Clinicaltrials.gov lists 100 clinical trials for EoE. Some of the companies sponsoring the clinical trials include Shire, Genentech, Teva, Regeneron, Novartis, Pfizer, GSK, Oxagen, and Celgene.

How do we build an EoE panel? Last year a friend at one pharma company called, letting us know his company was working on treatments in the area. We had a handful of EoE panelists who had been referred to RPV by patients with other conditions. The first step was to learn to pronounce it (E-o-SIN-o-fill-ik uh-SOF-a-JIE-tis). We found two patient events which we were able to sponsor , APFED in Indianapolis and CURED in Cincinnati, where we were able to exhibit, explain what we do, and sign up patients and caregivers. We obtained several dozen panelists at those events, and those panelists referred others from their support groups.

At my high school reunion in October, a friend I had known since third grade mentioned he had been diagnosed with, “Eo – something.” I asked “Eosinophilic Esophagitis?” and he said yes, how had I ever heard of it? He also joined the panel.

We will be sponsoring more EoE events this year to grow our panel.

Let us know if you have a future need – we’ll see how we can build a patient panel so that when you are ready to conduct some research, we’ll have patients ready to complete within 2 weeks.

About the author: Wes Michael, President and Founder of Rare Patient Voice, has been involved in rare and orphan diseases since 1998, interviewing and surveying patients, caregivers, physicians, nurses and advocacy leaders. Wes has more than 30 years experience in marketing research, and more than 15 years in healthcare marketing research.

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