Rare Disease Resource Library

Patient & Caregiver, Advocacy, Understanding Rare Disease, PDF, Education,

July 28, 2026

Clinical Trials Frequently Asked Questions

Patient & Caregiver, Advocacy, Understanding Rare Disease, PDF, Education,

April 28, 2026

Glossary of Clinical Research Terms

Patient & Caregiver, Patients & Caregivers, Genetic Testing,

July 15, 2024

¿Por qué debería hacerme pruebas genéticas incluso si tengo un diagnóstico? [Infographic]

Patient & Caregiver, Patients & Caregivers, Genetic Testing,

Why Should I Get Genetic Testing If I Already Have a Diagnosis? [Infographic]

Advocates, Fundraising, Patient & Caregiver, Students & Volunteers, Advocacy, Get Involved, Legislative Advocacy, Rare Disease Day,

April 29, 2024

National Volunteer Month Webinar

Advocates, Patient & Caregiver, Insurance, Legislative Advocacy, Regulatory, Webinar, Policy,

November 27, 2023

Medicaid Unwinding

Medical Professionals, Patient & Caregiver, Genetic Testing, Educational Video,

November 3, 2023

Pruebas Genéticas Para Enfermedades Poco Comunes Y No Diagnosticadas

Medical Professionals, Patient & Caregiver, Genetic Testing, Educational Video, Education,

Genetic Testing for Rare and Undiagnosed Diseases

Medical Professionals, Patient & Caregiver, Genetic Testing, Infographic, Education,

November 2, 2023

¿Qué son las Pruebas Genéticas?

Medical Professionals, Patient & Caregiver, Genetic Testing, Infographic, Education,

Genetic Testing for Rare Diseases