Frequently Asked Questions

What if my rare disease missing from the survey’s dropdown list?

There are approximately 7000 rare disorders. If your rare disease is not included in the drop down list, please choose “Other / My rare disease is not in the list” and enter your disorder in the text field below.

In the disease drop-down list, please choose “Other / My rare disease is not in the list” and type in the text field below “undiagnosed”.

Yes. If you want to exit before completing the survey, you will be given a return code (please write this down). You can continue where you left off by choosing “Returning?” in the upper right corner of the survey and enter your return code.

As a U.S.-based research organization, we limited the survey to patients based in the United States so we could begin capturing data on the impacts of COVID-19 as quickly as possible. The laws and regulations that oversee human subjects research and sharing data within and outside the United States are different. If non-U.S. groups would like to collaborate with us on the survey, they can email us at to explore options.

There is potential for additional follow-up studies in 2022 and beyond.

We plan to provide regular updates about survey participation through interim reports posted to our website. We will also make key results from the survey available to the rare disease community through the website. We may also publish reports of detailed analyses of the data in scientific journals, but we will ensure that key results are circulated directly to the community.

Preliminary results of our initial impacts survey can be found here. We will also add a dashboard to our website showing interim results of the follow-up survey as it is underway. Once the follow-up survey closes, the data will be analyzed and summary results will be shared through our survey website.

The survey will close on Wednesday, December 15th, 2021.

To help with survey recruiting or explore partnering for data collection on a particular patient population, please email