Resource Library Search Results

Advocacy, Research & Drug Development

Orphan Drugs in the United States: Rare Disease Innovation and Cost Trends Through 2019

COVID-19

NORD RareInsights^® COVID-19 Community Survey Report #2

COVID-19

NORD RareInsights^® COVID-19 Community Survey Report

COVID-19

NORD RareInsights^® COVID-19 Community Survey Infographic

Gene Therapy

Gene Therapy and Gene Editing: Current Status and Potential Impact on the Rare Disease Community

RDCA-DAP, Research & Drug Development

Published May 6, 2020

What You Need to Know About the Rare Disease Cures Accelerator-Data and Analytics Platform

Advocacy, Legislative Advocacy

Published April 1, 2023

Rare Disease Patients and the Inflation Reduction Act

Advocacy

Published October 15, 2022

Rare Neurological Disease Special Report

Genetic Testing

Published November 2, 2023

Genetic Testing for Rare Diseases

Genetic Testing

Published January 27, 2023

Genetic Testing for Rare and Undiagnosed Diseases

General Resources and Activities

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.

Rare Disease Day

Letterhead

Rare Disease Day

Press Release for Supporters – Sample

General Resources and Activities, Rare Disease Day

Printable Stickers

General Resources and Activities, Rare Disease Day

Coloring Pages

General Resources and Activities, Rare Disease Day

Crossword Puzzle

General Resources and Activities, Rare Disease Day

Crossword Puzzle Key

General Resources and Activities, Rare Disease Day

Word Search

General Resources and Activities, Rare Disease Day

Word Search Key

Rare Disease Day, Tools for Social Media

Social Media Toolkit

Rare Disease Day

Proclamation Toolkit – All Municipalities

Rare Disease Day

Press Release Patient Story – Sample

Rare Disease Day

Letter to the Editor – Sample

Rare Disease Day

Governor’s Proclamation Toolkit

Understanding Rare Disease

Published November 8, 2019

Pediatric Movement Disorders: Guidance for Parents and Physicians