For patients and families
Patient
Resources.
Everything you need to navigate clinical trials for a rare disease - from first search to final visit.
Find trials
Search tools.
Search
Find Trials
Search 500,000+ studies from ClinicalTrials.gov by disease name. Filter by recruiting status, phase, and location.
Live feed
New This Month
Trials that recently opened for rare disease recruitment. Updated daily from ClinicalTrials.gov.
Compassionate use
Expanded Access
Access experimental treatments before approval, for patients with no other options.
Guides
Know the process.
Step by step
How to Join a Clinical Trial
From finding a study to signing informed consent to completing follow-up. Every step explained in plain language.
Parents and caregivers
The Caregiver Guide
For the parent or partner doing the research at midnight. Pediatric-specific guidance, practical steps, and community.
Printable checklist
Ask Your Doctor
25 questions to bring to your next specialist appointment. Check them off, take notes. Print or save as PDF.
Grants and programs
Financial Assistance
Free flights, lodging, co-pay assistance, and grants. Money should not be the reason you cannot access a trial.
Reference
Learn and explore.
Plain language
Clinical Trial Glossary
Every term you will encounter - Phase 1, placebo, blinding, IRB, informed consent - explained without jargon. Searchable A-Z.
10,000+ diseases
Disease Directory
Patient advocacy organizations, natural history registries, and active trial links for common rare diseases.