Patients and Families
- Rare Disease Legislative Advocates (RDLA)
- The EveryLife Foundation
- Global Genes
- Genetic Alliance
- National Organization for Rare Disorders (NORD)
- The Genetic and Rare Diseases Information Center (GARD)
- The Rare Diseases Clinical Research Network (RDCRN)
- The Undiagnosed Diseases Network (UDN)
Orphan Drug Designation and Grants
- National Center for Advancing Translational Sciences Toolkit
- U.S. Food and Drug Administration: Developing Products for Rare Diseases & Conditions
Clinical Trials
Volunteer for a study:
- at the University of Minnesota
- at Fairview Health Services
- at the University of Minnesota Masonic Cancer Center
- Nationwide (via ResearchMatch)
- Nationwide (via ClinicalTrials.gov)