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May 11, 2020 Health Insights by Mary Chapman

The Pompe Disease Registry and How It Can Help Your Child

If your child has Pompe disease, you may consider enrolling them in the ongoing Pompe disease registry.  Among other things, the information that researchers collect through this registry is likely to help them better understand and treat inherited metabolic disorders like…

April 17, 2019 News by Patricia Inácio, PhD

Chinese Pompe Patients Show Symptoms a Decade Earlier Than Others, Review Finds

Chinese patients with late-onset Pompe disease develop symptoms and are diagnosed at least 10 years earlier than patients from other areas of the world, a Pompe disease registry shows. The study, “Characteristics of Pompe disease in China: a report from the Pompe registry” was published in the journal…

Recent Posts

  • Genetic test flags Pompe disease in expectant father with no symptoms
  • COL13A1 gene levels may link to Pompe neuromuscular dysfunction
  • Having a nurse at home over the summer has been a big help


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