Join the Contact Registry

The RDCRN Patient Contact Registry is a method by which patients with rare diseases can register themselves with the RDCRN in order to be contacted in the future about clinical research opportunities and updates on the progress of the research projects. The contact registry is anonymous and free of charge.

You (or your child) are invited to participate in a research project that will develop a nation-wide registry for patients.

How do I join?

The Contact Registry asks you for information such as your (or your child's) name, address, birth date, place of birth, email address, or items relevant to your (or your child's) disorders.

How does the Contact Registry Work?

Click on the name of your porphyria provided in the list to the right.
The Contact Registry Description and Purpose information will appear. When you are ready to join, click the "Join" button on the bottom center of your screen.
You will then be asked to read and agree to the Authorization Agreement
After you have read and agreed to the authorization, the Contact Registry form will appear on your screen.

Select one of the types of porphyrias below to join the Contact Registry for that porphyria:

Frequently Asked Questions about the RDCRN Contact Registry

What are the benefits of joining the Contact Registry?

Communication of open recruitment for clinical studies of your disease
Notice of opening of new clinical sites doing research on rare diseases
Information on activities from affiliated awareness and advocacy groups

...and future opportunities to participate in research!

Who Can Join the Contact Registry?

We encourage patients from all 50 states in the United States and every country to join the Contact Registry.

Is my information kept private?

Yes. Once you have entered and submitted this information online, the data will be stored in a secure, computerized database.

No personal identifying information (such as your name, address, telephone number) will be given to anyone without your expressed approval.