Rare Conditions, Real Stories Project
Share your genetic testing story to help inform, empower, and connect.
The Rare Conditions, Real Stories Project is a volunteer network of patients who have used a PreventionGenetics test and are interested in sharing their personal experiences to help inform and educate future patients about the importance of genetic testing.
Every participant chooses how and what they share. The program is personalized to honor each person’s interests, needs, and comfort level.
Empower others
Your experience can help someone facing similar questions or uncertainty.
Educate patients & families
Real stories make genomic testing more understandable and approachable.
Build community
Connect with a supportive network of rare disease advocates and patients.
How It Works
1
Apply
Submit the form below to tell us about your interest.
2
Consent & privacy
We’ll provide a clear consent process that puts your privacy first.
3
Initial conversation
We’ll reach out to share more about the program and learn more about your experience with genetic testing.
1
Apply
Submit the form below to tell us about your interest.
2
Consent & privacy
We’ll provide a clear consent process that puts your privacy first.
3
Initial conversation
We’ll reach out to share more about the program and learn more about your experience with genetic testing.
4
Share in your way
Discuss formats that feel right—written quotes, long-form narratives, audio, video, or anonymous highlights.
5
Review & approve
You’ll have the chance to review and approve any materials before they are published or shared.
Your Privacy, Your Choice
We respect your privacy. Participation is completely voluntary, and you’re in control of how your story is shared. You can request anonymity, limit identifiable details, and withdraw consent for future use at any time. We do not publish health information without your explicit permission.
- You’ll receive an onscreen confirmation message.
- Our team will review your submission and reach out within 7–10 business days.
- If you opt in, we’ll schedule a brief conversation to learn more and discuss next steps.
You remain in control of your story throughout the process.
Contact Us
If you have questions, please contact us at realstories@preventiongenetics.com