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