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To help patient advocacy leaders and their partners better understand how global health statistics codes — known as ICD codes — are assigned, updated, and revised in the U.S. health information system, the EveryLife Foundation for Rare Diseases is presenting a first-of-its-kind resource guide. The foundation created the…
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Strength training exercises did not aggravate muscle damage in people with late-onset Pompe disease (LOPD), although patients with significant changes in certain markers of muscle damage should be monitored while determining their best training regime. This result comes from the study “Muscle damage in response to a…
Those who wish to gain practical tools for living optimally with rare diseases are encouraged to attend the annual Living Rare Living Stronger Patient and Family Forum, hosted by the National Organization for Rare Disorders (NORD) and set this year for June 26-27. The conference brings together patients,…
Allowing others to help in her caregiving was a scary act of trust for columnist Keara Engle, but one that boosted her quality of life.
Check out Pompe Disease News‘ collection of Health Insights, where you can find more information and guidance.
Pompe disease is a rare genetic disease characterized by the abnormal buildup of a sugar molecule called glycogen inside cells. Learn more about the disease here.
Pompe disease is an inherited condition caused by genetic mutations in the GAA gene, which provides instructions for the acid alpha-glucosidase enzyme. Learn more about what causes the disease here.
Muscle weakness is the predominant symptom of Pompe disease. Other symptoms depend on the type of Pompe patients have. Learn more about the symptoms of the disease here.
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