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Rare Patient Voice

Helping Patients with Rare Diseases Voice Their Opinions

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    • The Impact of Rare Diseases on Patients and Caregivers
    • 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

Where do we find our clients?

May 5, 2019 Wes Michael

We are proud to have over 300 clients and we keep gaining new ones. Where do we find them?

Fortunately, I have been in the healthcare market research field for over 20 years, and over time I’ve met and worked with many people, so when we started Rare Patient Voice 6 years ago, they were the first people I told about it and many became clients.  I worked for a market research company called Migliara/Kaplan Associates (M/K), which over the years evolved to TNS Healthcare and Kantar Health, and so many people I worked with I was in touch with and they became clients when they needed patient sample.

From those I knew, word-of-mouth was probably the greatest factor in spreading the word and finding more clients. People ask others they know in the industry where they might access patients, and we are thankful that our name is passed along.

We go to a lot of market research conferences to spread the word as well. We started with healthcare market research conferences such as Intellus, IIex Health, and have gone beyond to other general market research conferences such as IIex, TMRE, and Quirk’s. Also, some specific conferences like the DTC National, where we also meet many advertising and communication agencies that need to hear what patients have to say. And we’ve been to ISPOR, a conference that focuses on Health Economics Outcomes Research. This year we’ll be going to the UXPA Conference, focusing on user experience. All of whom need patients! And also, rare disease conferences like the World Orphan Drug Congress, Global Genes, and NORD. At each conference we always find new potential clients that need patients and caregivers for their research.

While our direct clients are mostly market research firms, the end clients, pharmaceutical, biotech, and device companies, also help spread the word. When they have a patient study in mind, they will often bid it out to various research agencies, and let each of them know that Rare Patient Voice might be a good source of patients. We appreciate when they spread the word!

And finally, you’re probably seeing this video on another source – Linked In! By spreading the word on Linked In, with posts and videos, we constantly are exposed to new clients!

Thank you for spreading the word! If you know someone who needs to conduct research among patients or caregivers in the US or Canada, let them know to contact Rare Patient Voice!

Thanks!

Filed Under: Business

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