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Shape the Future of Rare Diseases as a UX Research Participant.
Communities hold the key to showing and teaching us the best ways to accelerate progress. By hearing directly from you what’s most important—your priorities, needs, and limitations—we can lift up the rare disease community as we develop tools and programs. By signing up to share your thoughts in our user studies, you will be supporting the rare disease community—and you will also get paid for research participation in the form of an Amazon gift card.
Types of Research Participants
We’re looking for people with a wide range of experiences in rare disease.
Patients & Loved Ones
Patient Organization Leaders
Healthcare Providers
Researchers
Get Involved
Participate in User Experience Research
If you're a good fit for a study, one of our team members will contact you by email and invite you to participate in a session. We may ask additional questions before confirming your participation. Studies will take place online via video conference and will be scheduled at a time that works best for you.
User Experience Research at CZI
In order to build human-centered solutions, CZI’s User Experience Research team works to discover and understand people’s attitudes, sentiments, struggles, and needs. The team conducts research through interviews, surveys, group brainstorms, co-design workshops, virtual visits, and more.
If you decide to participate in user studies, you may be asked for your opinion on ideas, tools, and services. Sometimes we conduct user experience research on new ideas, while other times we ask for input after an idea or tool has launched, so that we can understand how it can be improved. By conducting user experience research using video conferencing, we’re able to reach the widest possible audience of potential participants. We can’t wait to hear from you!
Frequently Asked Questions
Learn more below or contact us at rareasone@chanzuckerberg.com.
Why participate?
As patients, patient leaders, researchers, and clinicians, you have the deepest understanding of the rare disease community’s needs. We’re eager to learn about your experiences and to hear your feedback in order to continue developing impactful tools and programs.
Who can participate?
We are interested in hearing from a broad range of voices. If you are a rare disease patient, loved one, health care provider, clinician, or researcher focused on rare disease, we’d love to learn about your experiences.
How does participation work?
Sign up and fill out a brief questionnaire that will help our research team match you to particular studies. If you’re a good fit, a team member will reach out to you via email and invite you to participate in a specific user experience research discussion. We may ask additional questions before confirming your participation. Studies will take place online via video conference.
Can I change my mind about participating?
Participation is voluntary. If you decide to participate, you may withdraw at any time.
Help Shape the Future of the Rare As One Project
Participate in User Studies
