Building Trusted Information Together
RareConnect combines AI-powered content generation with community expertise and rigorous review to create the most accessible rare disease information available.
How We Create Disease Information
Our unique approach combines the efficiency of AI with the wisdom of human experience and expert oversight.
AI Generation
Claude AI creates comprehensive, patient-friendly summaries from medical and scientific sources.
Moderation Review
AI moderation scores content for accuracy, clarity, and appropriateness before publication.
Community Input
Anyone can suggest edits, add sources, or improve content based on lived experience.
Human Approval
Platform administrators review flagged content and approve community contributions.
AI-Powered, Human-Approved
Our AI assistant, powered by Claude, generates comprehensive patient-friendly summaries by synthesizing information from medical literature, clinical resources, and patient advocacy materials.
But AI is just the starting point. Every piece of content can be improved by our community—patients who live with these conditions, caregivers who support them, and clinicians who treat them.
The result? Information that's both scientifically grounded and deeply informed by real-world experience.
7 comprehensive sections covering overview, symptoms, causes, diagnosis, treatment, prognosis, and research.
Anyone can suggest improvements. Contributions are reviewed and scored before publication.
AI moderation + admin review ensures accuracy, safety, and appropriateness.
Radical Transparency
Unlike traditional medical resources, every piece of information on RareConnect has a visible history. You can see exactly how content evolved.
Full Version History
Every edit is tracked. See exactly what changed, when, and who contributed—like Wikipedia.
Source Citations
All information links back to medical literature, patient resources, and verified sources.
Edit Rationales
Contributors explain why they made changes, creating a transparent knowledge trail.
Contributor Recognition
Active contributors build reputation through approved edits and quality contributions.
Everyone Has a Voice
The best disease information comes from diverse perspectives. We welcome contributions from anyone with knowledge to share.
Patients & Survivors
Share lived experience and real-world insights that medical literature misses.
Caregivers & Families
Add practical guidance on daily management and family support.
Healthcare Providers
Ensure clinical accuracy and add professional medical perspective.
Researchers
Keep content current with the latest scientific discoveries and trials.
How to Contribute
Contributing to RareConnect is simple. Here's how to get started.
Find a Disease Page
Browse our directory of 26,000+ diseases or search for a specific condition.
Click "Suggest Edit"
Each section has an edit button. Click it to propose improvements to that specific section.
Submit Your Contribution
Add your changes, cite your sources, and explain why the edit improves the content. Our system will review and publish approved edits.
Start Exploring
Discover patient-friendly information on thousands of rare diseases, or contribute your knowledge to help others.