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Pinpoint Community
Frequently Asked Questions
Frequently Asked Questions

What is the Pinpoint Community?

It is a group of patients and caregivers who are interested in opportunities to share their experiences living with a rare disease or other medical condition. As a member of the community you give consent for Pinpoint to contact you with invitations to participate in ways to share your story, like phone interviews or online surveys. There is never an obligation to participate and you can be asked to be removed from the panel at any time. Read our full privacy policy for more details on how your data is used. 

Why join the Pinpoint Community?

Sharing stories helps experts as they develop new treatments and materials to educate others. Participants are always paid for their time. On average you could earn $125/hour for opportunities that you qualify for and complete.

What will happen when I join?

You will receive invitations to participate in online surveys, interviews and more based on the information you provide. All these opportunities are carefully reviewed and you will only receive invitations to ones that we believe will be a meaningful experience for you (no spam - we promise!)

What kind of information will I be asked to share in surveys and interviews?

Most of the opportunities will be looking to better understand your experience as a patient or caregiver. For example, you may be asked about your preferences when it comes to treatments, where you get information and about interactions with your healthcare providers. All responses you give will remain anonymous (not attached to you) in the research (unless you give consent for your identify to be revealed). 

How do I get paid?

We pay participants who complete an activity by mailing a check to them within 7-10 days of completing the activity.

Is my information safe?

We take privacy very seriously. Your information will be kept confidential and never shared without your prior permission. You can be removed from the Pinpoint Community Panel at anytime by emailing or requesting to unsubscribe here. 

Your story matters. 

There are new opportunities to share your voice each week.

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