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June 21, 2022 Columns by Keara Engle

My Son’s First Evaluation at the Behavioral Health Clinic Goes Smoothly

Last week, my 4-year-old son, Cayden, had a telehealth appointment with a pediatric psychologist. She works in the behavioral health clinic at the children’s hospital where we take Cayden for all his other specialists. The appointment was recommended by his metabolic doctor, whom we see every three to…

April 13, 2022 News by Hawken Miller

Telehealth Added to Latest Digital-friendly NORD State Report Card

The National Organization for Rare Disorders (NORD) has updated its State Report Card to make it more digitally friendly and added telehealth to its categories of rare disease policy issues in a nod to its increased use during the ongoing COVID-19 pandemic. NORD’s report card project began seven…

February 28, 2022 News by Hawken Miller

Surge in Telehealth Brings Access, Convenience to Rare Disease Patients

A rare disease puts an economic burden on the patients, families, and caregivers that it affects, and will no doubt be an integral part of discussions on Rare Disease Day 2022, which brings international awareness about the more than 300 million people living with rare disorders. Part of that…

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

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  • Gene, enzyme replacement improve mice’s breathing, limb strength


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