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Rare Patient Voice

Helping Patients with Rare Diseases Voice Their Opinions

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    • 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

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 the ‘70s may remember the Green Acres episode about the governor’s  State of the State Statement*). So let me give a brief State of Rare Patient Recruiting.

  • In the industry in 2014, a record 15 orphan drugs were approved by the FDA, fully 40% of all new drugs approved.
  • Rare Patient Voice grew from one US patient panel in 2013 to 71 in 2014, with over 25,000 patients/caregivers. For a list of panels and patient counts see: https://rarepatientvoice.com/for-biopharma-and-market-researchers/
  • To sum up 2014, we:
    • Attended 20 patient events across the US, recruiting 5,000+ authentic patients/caregivers
    • Conducted 193 patient recruits projects across 52 categories with over 4,000 patients/caregivers
    • Distributed $290,912 in honoraria to patients and caregivers

What does this mean for you? In most cases, we can recruit the rare patients you need in 2 weeks or less, for both qualitative and quantitative studies.

In 2015, we look forward to building more patient panels that you need. Let us know the patients you will require!

* Green Acres Episode “King Oliver I,” you can see it at: http://www.imdb.com/video/hulu/vi2799896857  The governor raises taxes 52%, Hooterville secedes from the state, and declares Oliver (Eddie Albert) the king. But Lisa (Eva Gabor) suggests the state raise money by having a Governor Carstairs film festival (governor actors were a hot topic then, with Ronald Reagan governor of California).

 

Filed Under: Business

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