You Are the Missing Piece
The world's most accurate rare disease registry can't exist without you. AI gives us speed. Medical experts give us accuracy. But only patients, caregivers, and advocates can give us the truth of lived experience.
Why the Community is Essential
Medical literature tells you what a disease is. Clinical trials tell you what treatments exist. But neither tells you what it's actually like to live with a condition - the daily challenges, the small victories, the practical workarounds that make life manageable.
That knowledge lives in the rare disease community. It's in the Facebook groups, the late-night forums, the conversations between caregivers at support meetings. It's invaluable - and it's never been systematically collected and shared.
"We're not just building a database. We're building a collective memory of lived experience that will help every patient who comes after."
RareConnect.io gives that knowledge a permanent home - structured, searchable, and available to everyone who needs it.
What You Can Contribute
Every type of knowledge has value. Here's how different contributions help build better disease information.
Lived Experience
Share what it's really like. The symptoms that don't make it into textbooks. The side effects doctors don't warn you about. The daily hacks that make life easier.
Knowledge & Research
Know of a clinical trial? Found a great resource? Have expertise in a related field? Help us keep disease pages current and comprehensive.
Feedback & Corrections
See something wrong? Notice outdated information? Your corrections make every report more accurate for the next patient who reads it.
Stories & Support
Share your journey. Your diagnosis story, your treatment experience, your message of hope. Stories connect patients and remind everyone they're not alone.
Find Your Path
Different backgrounds bring different strengths. Choose the pathway that fits your expertise.
Living with a Rare Disease?
Your experience is invaluable. Provide feedback on disease pages, share your story, or suggest edits based on what you've learned.
Share Your PerspectiveMedical Professional?
Get verified to contribute directly to disease reports. Your clinical expertise ensures our content is medically accurate.
Get VerifiedResearcher or Scientist?
Link your publications, update disease information with the latest findings, or become a report steward for your specialty.
Contribute ResearchRepresent a Patient Group?
Claim your organization's profile, connect with your community, and ensure patients can find the support they need.
Claim Your PAGThe Impact of Your Contribution
Every edit, every story, every piece of feedback makes RareConnect.io better for everyone.
26,000+
Disease pages to improve
Growing
Community of contributors
Worldwide
Patients helped
Free Forever
Access to all content
How Contributions Are Reviewed
We balance openness with quality. Here's how your contributions become part of the knowledge base.
Submit
Make an edit, share feedback, or submit a story. All contributions are welcome, regardless of your background.
AI Review
Our AI moderation scores contributions for accuracy, clarity, and appropriateness. This helps prioritize review.
Human Approval
Expert moderators review flagged content and approve quality contributions. You'll be credited for your work.
Recognition
Build reputation through quality contributions. High-trust contributors gain additional privileges over time.
Every Contribution Matters
The rarest diseases have the fewest resources. Your knowledge - however specialized - could be exactly what another patient needs to find hope, answers, or support.
Questions? Contact us →