How to Support Rare Disease Patients During COVID-19

Posted by Michael Thomas on Thu, Mar 26, 2020

Greg Fry co-wrote this blog post with Michael Thomas.

Members of the rare disease community—patients, families and caregivers—are accustomed to managing life in crisis mode, cancelling plans at the first sign of illness and feeling isolated, but the pandemic has introduced a new level of concern. With so much focus on COVID-19, rare disease patients are left with fear and uncertainty over healthcare systems’ bandwidth to accommodate their needs. It’s possible that they could experience critical gaps in care like product shortages, fewer healthcare workers available to administer drugs and difficulty getting to infusion appointments. Unfortunately, the response to many of today’s questions about what the novel coronavirus means for rare disease patients is, “We don’t know, exactly.” But we need to ensure that we’re exploring new alternatives and thinking creatively to develop solutions that either ease these tensions for patients or create bridges that are meaningful, empathetic, supportive and, of course, compliant.


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Now I Know What It Means to Be a Rock Star

Posted by Michael Thomas on Wed, Jun 12, 2019

The lights go down. The crowd erupts in anticipation. An iconic rock band is about to step on stage, and you are about to take part in an immersive, overwhelming experience for the next three hours. I love this moment, and I’ve always wondered what it must be like on that stage, knowing that people are so inspired by what I do. 


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