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November 26, 2020 News by Marta Figueiredo, PhD

Survey Finds COVID-19 Disrupted Care, Well-Being of Rare Disease Patients in Europe

The first wave of COVID-19 in Europe severely disrupted access to care and raised stress and anxiety in people with rare diseases, negatively affecting their health and well-being, according to a survey conducted by Eurordis-Rare Diseases Europe. “People living with rare diseases in Europe have found themselves caught as collateral…

October 19, 2020 News by Marisa Wexler, MS

Telehealth ‘Helpful’ Alternative to In-person Care, Rare Disease Patients Say

A majority of rare disease patients using telehealth during the COVID-19 pandemic thought the experience positive, and many would like the option of continuing its use in future appointments, a series of surveys found. The surveys were conducted by the National Organization for Rare Disorders (NORD) and involved more than 800…

April 28, 2020 News by Grace Frank

Surge in Telemedicine One ‘Good’ Outcome from COVID-19 Crisis, Doctors Say

While there are few silver linings to the cloud created by COVID-19, the pandemic that has killed tens of thousands, hobbled economies worldwide and drove millions to quarantine in their homes, one may be a new appreciation of telemedicine. “If something good could come out of this crisis, it’s that…

Recent Posts

  • Gene, enzyme replacement improve mice’s breathing, limb strength
  • Short-distance walking speed test in Pompe disease is less demanding
  • Nervous system involvement is common in Pompe disease: Study


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