Published February 26, 2025
Keepin’ It Rare: Let’s Talk Therapy with Dr. Al Freedman
Hear patients, caregivers and advocates discuss the mental health impacts of rare diseases in this 5-part video series.
Resource Library
Published November 15, 2024
Rare Disease Advisory Council 2024 Stakeholder Webinar Recording
The National Organization for Rare Disorders (NORD®) hosted this webinar for advocates interested in establishing Rare Disease Advisory Councils in every U.S. state. With the support of NORD, other patient organizations and stakeholders in the rare disease community, RDACs are enabling states to strategically identify and address barriers that prevent individuals living with rare diseases from obtaining proper treatment and care for their condition.
Published August 27, 2024
Inequities in the Rare Disease Community: The Voices of Diverse Patients and Caregivers
This report contains the findings from a 2023 survey by NORD and the Rare Disease Diversity Coalition (RDDC) regarding barriers to care faced by underrepresented populations within the rare disease community.
Published July 15, 2024
¿Por qué debería hacerme pruebas genéticas incluso si tengo un diagnóstico? [Infographic]
Published July 15, 2024
Why Should I Get Genetic Testing If I Already Have a Diagnosis? [Infographic]
Published April 29, 2024
National Volunteer Month Webinar
Published December 8, 2023
Los Latinos Y Las Enfermedades Raras: Fomentando el acceso igualitario en la comunidad de enfermedades raras
Published December 8, 2023
Latinos & Rare Diseases: Building Equitable Access in the Rare Disease Community
Published November 21, 2023
Medicaid Unwinding
Published January 27, 2023
Pruebas Genéticas Para Enfermedades Poco Comunes Y No Diagnosticadas
Published January 27, 2023
Genetic Testing for Rare and Undiagnosed Diseases
Published November 2, 2023