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April 12, 2022 News by Lindsey Shapiro, PhD

9th Annual Global Event to Highlight Strength of Patient Community

The 9th annual International Pompe Day will be celebrated on April 15 to raise global awareness of Pompe disease and highlight the strength and resilience of the patient community. The event, with the slogan “Together We are Strong,” is organized by the International Pompe Association (IPA) — a…

September 21, 2021 News by Steve Bryson, PhD

Patients: Faster Diagnosis, Earlier Treatment, Better Education Needed

Adults with late-onset Pompe disease in the U.K reported a long and distressing diagnostic process, with most patients calling in interviews for a reduced time to diagnosis, a shorter wait for a specialist appointment, and an earlier treatment start, a study found. At diagnosis — which often came only…

Recent Posts

  • Orthodontic care benefits young girl with infantile Pompe disease
  • Myozyme may help LOPD patients walk, breathe over long term
  • Genetic test flags Pompe disease in expectant father with no symptoms


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