Families that have members with rare diseases may face challenging situations during the pandemic. They're experts in navigating complex medical situations, but they must now weigh the risks and benefits of taking a loved one with a complication from a rare disease to a hospital.
"We have experience living with uncertainty, for years or even decades. Many of us have experience with isolation, and medically fragile people have always needed to be careful of exposure to people with illnesses. And many of us haven't been able to do things other families do," said Albert Freedman, PhD, a clinical psychologist and caregiver for a 24-year-old son who has spinal muscular atrophy (SMA). He spoke at a webinar that the National Organization for Rare Disorders (NORD) convened March 31, "A Rare Response: Addressing the COVID 19 Pandemic."
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