Last updated: 05-07-2020

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.

Rare Diseases Are Not Rare! Challenge


Channel your creativity into an entry for our Rare Diseases Are Not Rare! 2020 Challenge. Submissions are open until June 15. Use the social media graphics below to help spread the word about the Challenge!

NIH-Supported Research Survey


How are you being impacted by the coronavirus pandemic? Please complete a 20-minute online research survey from home to share your experiences. This study is being conducted by the NIH-funded RDCRN.

Fact Sheet

Get the facts about rare diseases — what they are, whom they affect, and how NCATS supports innovative approaches for understanding and treating rare diseases.

The first page of a fact sheet about rare diseases with a banner image at the top followed by text.

Click the image above to view/download the fact sheet.

Infographic

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.

A small version of a larger graphic that has stylized depictions of facts and statistics about rare diseases.

Click the image above to download the full-size image.

Resources

For Patients

Stylized text of the Genetic and Rare Diseases Information Center name

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.

For Patient Support Organizations

Stylized text of the Toolkit for Patient-Focused Therapy Development name

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.

Stylized text of the Rare Diseases Registry Program name

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.

Social Media

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.

Click the images below to download them to use on your social media pages.

Rare Diseases SocialMedia Banner 1
Rare Diseases SocialMedia Banner 2
People walk down a street facing away from the camera. In the center there is a white rectangle with text reading, “An estimated 30 million people in the United States are affected by rare diseases.” The NCATS logo is in the lower left.
People walk down a street facing away from the camera on the right. On the left, text overlays white space reading “An estimated 30 million people in the United States are affected by rare diseases.” The NCATS logo is in the lower left.
A rectangle with a color gradient behind white text, which says “Only 5% of rare diseases have approved treatments.” To the right of the text box is a stylized image of a stethoscope. The NCATS logo is in the lower left.
Against a color gradient background, three stylized hands appear and touch. To the right, colored text in a white rectangle reads, “Working together to advance rare diseases research.” The NCATS logo appears in the lower right.