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Rare Patient Voice

Helping Patients with Rare Diseases Voice Their Opinions

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Helping Patients and Caregivers Voice Their Opinions

The birth of a panel – Eosinophilic Esophagitis

March 26, 2016 Wes Michael

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 … READ MORE

Filed Under: Business

Caregivers – Myth and Reality

March 26, 2016 Wes Michael

We talk about patients, but caregivers (or “carers” to our British friends) are also important. In some disease categories, such as Hemophilia, Lennox Gastaut Syndrome, and Spinal Muscular Atrophy, where … READ MORE

Filed Under: Business

Just the FAX, Doc

March 29, 2015 Wes Michael

What is it about faxes that physicians’ offices love so much? Is there a worse way to protect patient privacy than sending test results to a machine where the pages … READ MORE

Filed Under: Business

Tips for recruiting cancer patients

March 14, 2015 Wes Michael

We’ve recruited 93 cancer patient projects this year across 25 different tumor types since teaming up with WhatNext.com, the official social health site of the American Cancer society. Projects have … READ MORE

Filed Under: Business

The State of Rare Disease Recruiting

March 14, 2015 Wes Michael

Happy New Year! January is a time to recap and look forward. The President delivers the State of the Union Address. (Those of us who grew up watching TV in … READ MORE

Filed Under: Business

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