Pompe Support Network

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…

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…