Rare Diseases Community Resources
NCATS offers free materials and resources to help patients, caregivers, patient support organizations, health care providers and scientists learn about rare diseases and help advance research on them. You can use the resources below on social media, on web pages, or at meetings, clinics and other places to raise awareness and to connect with the rare diseases community.
The COVID-19 pandemic has profoundly affected nearly every aspect of the rare disease world. The greatest impacts of the pandemic, however, have been felt by the patients themselves and their families. Read a reflection on this year’s Rare Disease Day at NIH to hear from patients in the rare disease community and what we learned.
Did you know that more than 30 million people in the United States have a rare disease? Learn more and spread the word with our infographic about rare diseases.
Click the image above to download the full-size image.
Access resources through NCATS’ Genetic and Rare Diseases Information Center (GARD):
- Call the GARD Information Center at 1-888-205-2331 to speak to an information specialist about rare or genetic diseases in English or Spanish.
- Find advocacy organizations in the GARD database.
- Browse GARD’s list of rare diseases and related terms. The list includes the main name for each condition, a summary, symptoms, statistics, research, advocacy organizations and patient registries.
- Download the GARD handout (PDF - 638 KB).
The Rare Diseases Clinical Research Network (RDCRN) — coordinated by NCATS in collaboration with nine NIH Institutes and Centers — brings scientists at hundreds of clinical sites from around the world together with their patient support organization partners to study more than 200 rare diseases. The network consists of 20 individual consortia and a Data Management and Coordinating Center that work together with representatives of nearly 130 patient advocacy groups to advance rare diseases clinical research and investigate new treatments for patients. Learn more about currently funded rare diseases research groups and collaborating patient organizations. Download the RDCRN fact sheet.
For Patient Support Organizations
Whether your patient group is new to supporting rare diseases research or already involved in research initiatives, the NCATS Toolkit for Patient-Focused Therapy Development can provide reliable, relevant information about how to engage in the therapy development process, from discovery through post-approval safety and effectiveness monitoring. Learn about the NCATS Toolkit for Patient-Focused Therapy Development in this fact sheet (PDF - 645KB) or download the NCATS Toolkit handout (PDF - 265 KB).
Looking for advice on setting up and maintaining quality registries for rare diseases to stimulate research? The Rare Diseases Registry Program (RaDaR) explains the different types of patient registries, provides step-by-step guidance on setting up and maintaining registries, and offers resources to promote best practices and data sharing. Download the RaDaR handout (PDF - 423 KB).
The Rare Diseases Are Not Rare! Challenge, led by NCATS’ Office of Rare Diseases Research (ORDR), seeks creative ways to raise awareness for all rare diseases, encourage collaborations across the community and highlight the importance of rare diseases research and the need for new treatments. The Challenge originally ran in 2018 and returned in 2020. Browse the gallery of creative works from 2020’s winning and honorable mention submissions, including poems, spoken-word performances and personal stories.
Stay connected and up to date on rare diseases research! By including the hashtag #RareDiseases in your social media posts, you can help us all be part of the same conversation. Follow @ncats_nih_gov and @ORDR on Twitter for the latest news from NCATS and the NCATS Office of Rare Diseases Research.
You can use the messages and graphics below to share NCATS’ rare diseases resources on your own social media pages.