Sunday, April 12, 2020

Patient Worthy COVID-19 Survey About Medical Care and Information Sharing

Just like CCA, Patient Worthy will not be stopped by COVID-19. Both organizations are dedicated to the patients we serve. On behalf of Patient Worthy, we would love for our craniofacial community to come together to share about how their medical experiences have changed, or stayed the same, during the current pandemic. 

If you are not familiar with Patient Worthy, they are a clearinghouse for news about rare disease. They also connect patients with the latest in research, new treatments, and medical providers that specialize in a wide variety of specialties in the rare disease world. Rare disease patients can also share their stories. Learn how to contribute your voice here. 

Right now, in the wake of the COVID-19 pandemic, they are asking their friends to fill out this survey about how medical professionals, medical nonprofits, and fellow patients can help us along this uncertain journey we all face as medically complex individuals during this unique time in history. 

You can learn more about the survey on Patient Worthy's website. Rebekah Horsting, Community and Content Manager at Patient Worthy describes the survey as an effort that they launched in collaboration with te Snow Companies, "to learn more about how the COVID-19 pandemic is impacting patients and caregivers and the way they manage healthcare." A direct link to the survey can be found below. Thank you, in advance, if you choose to take part in this little bit of research. 

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