Help Us Understand the Impact of COVID-19


As Patient Worthy readers, we hope you and your families are doing well during this challenging time. The health and safety of our rare community is always at the forefront of our mind, but today it’s more critical than ever.

We’ve heard from many of you that you have a lot of concerns and questions about what comes next. As your online ally bringing you rare disease awareness and education, we want to learn more about how the COVID-19 pandemic is impacting you and the way you manage your healthcare. That’s why we’re partnering with the Snow Companies, leaders in the patient engagement space, to bring you a short survey. (To get started with the survey, click here.)

We’d like to hear about the disruptions you’ve experienced so we can identify resources and services that might help patients and caregivers manage them. This is a chance to make your voice heard, so please answer each question as honestly as possible. This is totally voluntary and anonymous, so we won’t be collecting or sharing your personal information outside of Patient Worthy or the Snow Companies.

If you’d like to participate, please click the link below and complete your survey by April 22, 2020. If you have any questions at all, please don’t hesitate to contact us at [email protected].

Thank you again for your help, and please continue to stay home and stay safe!

To get started with the survey, click here.


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