The Rare Diseases Clinical Research Network (RDCRN) Contact Registry is a way for patients with rare diseases and their family members to learn about research studies they may be able to join. Participation is completely voluntary and you may choose to withdraw at any time. There is no cost to join the Contact Registry.

How to Join
Type your disease name in the box below, then click the disease link to join.

Already Registered?


You will need your UserID and Key to login. You received this information when you enrolled. If you need assitance logging in, contact:

You will:

  • Receive news about new or ongoing studies for your disease
  • Receive information about your disease
  • Receive information on activities from patient advocacy groups
  • Have the opportunity to share information about yourself with researchers and patient advocacy groups
  • Have a chance to be contacted directly by researchers to join studies

We encourage patients from the United States and every country to join the Contact Registry.

You may choose to share your contact information with researchers in and/or with patient advocacy groups. Sharing your information is completely optional.

If you agree to share your contact information, the information you enter into the RDCRN Contact Registry Enrollment Form will be sent to the researchers and/or patient advocacy groups that you choose so that they may contact you directly.

When you share your contact information with researchers, they may use your information to match you with current studies. They may also contact you to ask you for additional information in order to determine whether you can join a study.

If you do not want any of your contact information to be sent to researchers or patient advocacy groups, you can choose "Please do not share my information with anyone". Choosing not to share your information will not affect your ability to join the RDCRN Contact Registry or research studies.

No, joining the RDCRN Contact Registry is not the same thing as joining a clinical research study. The RDCRN Contact Registry notifies you of research studies you may be interested in joining.

Once you join the RDCRN Contact Registry, you will receive emails with information about current research studies for your disease. In these emails, you will be given information about how to join the research study. You will also be able to contact the researchers to ask any questions about the study.

Yes. Choosing to join the RDCRN Contact Registry does not affect your ability to join other registries.