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Rare Patient Voice

Helping Patients with Rare Diseases Voice Their Opinions

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    • The Role of Patient Advocacy Groups
    • Zebras Do Exist: The Diagnostic Odyssey of Rare Disease Patients
    • Patient Insights on Telehealth: A Case Study
    • Hearing is Believing: Reducing Barriers to Amplify the Patient Voice

Helping patients and caregivers share their voices

Are Rare Patient Voice panelists spread across the United States?

April 7, 2019 Wes Michael

We get several variations of this question. Since many people know we recruit patients at patient events like walks and conferences, they wonder if we have patients from all over the US. Sometimes they are looking for clusters in certain areas, useful for central facility or in-home projects. Other times they are interested in the geographical dispersion of our panel.

We do recruit in person at patient events. So, we do have some clusters of patients where we have recruited, such as Lupus patients in Chicago. But several things have helped us obtain patients from all 50 states. First, we are no longer just depending on me traveling to patient events every weekend! We now have a team of over 60 Patient Advocates (many are patients in our panel) across the US attending events all over. We attended 350 events last year!

But what also helps is that those patients who sign up at these events spread the word! They are often in support groups, have closed Facebook pages, or in the case of genetic diseases, have extended family members who also suffer from their condition. They spread the word to their contacts, especially after they have taken part in a survey or two, get comfortable with the process, see that they aren’t marketed to, are paid quickly as promised and interact with empathetic moderators and get to share their opinions through surveys. These referrals fill in the gaps with patients from all over the country.

If you need patients or caregivers in specific markets, let us know. We can provide counts by metro area. Or if you need help selecting markets, we are happy to send locations of patients so you can see where our patients are, by disease.

 

We cover the US!

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