Citizen Health is a secure, digital platform that helps families gather and manage their medical data while contributing to research.
Citizen works in collaboration with RARE-X and Simons Searchlight, not as a replacement. Together, these two platforms provide a more complete picture of the MED13L journey:
- Citizen focuses on medical record collection and organization.
- RARE-X and Simons Searchlight captures caregiver-reported data through structured surveys.
Used together, they create a powerful foundation for understanding MED13L Syndrome and preparing for clinical trials.Why Participate?
- You Own the Data
All data you upload to Citizen is accessible to you. You can download it and share it with doctors, therapists, and care teams. - Accelerate Research and Trials
By contributing real-world health data and records, you help researchers understand disease progression, refine outcome measures, and prepare for clinical trial design. - Global, Inclusive, and Accessible
Families from around the world can upload medical records in any language. Participation is open to individuals living or deceased. - Mobile-Friendly and Easy to Use
Citizen simplifies medical data management, making it easy to participate in research while organizing your loved one’s health history in one place. - Strict Privacy Protections
Citizen is fully compliant with international privacy laws, including HIPAA and GDPR. Your data is de-identified and only shared with your explicit consent.
How to Get StartedDuration: Ongoing
Who Can Participate: Anyone with a confirmed or suspected MED13L diagnosis (living or deceased)
Contact: kbboychuck@med13l.org
🔗 Sign Up: Join the Citizen Program
- Ongoing Opportunity
