Resource Library

Advocacy, Research & Drug Development

Published December 13, 2024

How To Advocate For Rare Disease-Related Policies: A Guide for Professionals Involved in Diagnosis, Care, or Research of Rare Diseases

Advocacy, Rare Disease Advisory Councils (RDAC)

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.

Genetic Testing

¿Por qué debería hacerme una prueba genética si ya tengo un diagnóstico?

Genetic Testing, Understanding Rare Disease

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

Diversity, Equity & Inclusion

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