Resources
NORD (National Organization for Rare Disorders)
- Resources for Undiagnosed Patients
- Patient and Caregiver Resource Center
- Educational Videos
- Webinar Series
NIH Genetic and Rare Diseases (GARD) Information Center
Tips for the Undiagnosed
- Help with Travel Costs guide
- Financial Aid for Medical Treatment
- Finding reliable health information online
- How to Get Involved in Research
- Clinical Research studies for rare disease
- Patient Registries for rare disease
Global Genes
Empowering patients, building communities and driving forward momentum for rare disease globally.
Rare University
Genetics concepts for Rare Disease Patients and Families.
Patient Advocate Foundation
Provides case management services and financial aid to Americans with chronic, life threatening and debilitating illnesses.
Genetic Alliance
Rare Disease & Genetic Conditions Support Community.
