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Rare Patient Voice

Helping Patients with Rare Diseases Voice Their Opinions

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Helping patients and caregivers share their voices

We are sorry

Thank you for participating in our latest survey. Unfortunately, we are looking for people with a different profile or the seats filled up in the study. If you have any questions, please contact the Project Manager on this study. You can find this information in the study email invitation.

Please be assured, since you did not qualify for this study, none of your preliminary answers will be used.

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To show our appreciation for your time, each month we automatically enter people who do not qualify for a study into a raffle for a 100 dollar Amazon gift card. Please know that you've been entered into the raffle, and this month's randomly chosen winner will be notified via email.


We now have the ability to send you invitations through text message.

Please log into the Member Dashboard and go to the SMS Verification tab on the left sidebar. You will be able to request a verification code to your mobile phone number. Once you have received it as a text, enter it into the textbox and click Verify to opt into the Text Message invites.

Latest Blog Posts

  • Wes Michael Honored With 2025 Insight250 Award
  • Read About Overcoming Challenges to Engaging Rare Patients in Clinical Research
  • Wes Michael Talks Connecting Patients and Researchers on The Pickle Jar Podcast
  • Sharing My Voice: Kathryn’s Story
  • Pam Cusick Discusses the Power of Patient Stories on Story Conversations Podcast

Check out our YouTube Channel

https://youtu.be/cfjkqh5Ykp0

Read Our Newsletter

Read our Newsletter
What’s New at Rare Patient Voice?

Rare Patient Voice

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Regular business hours are Monday through Friday, 9am-5pm ET.

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