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Share your experiences with Pompe disease 

We are searching for people living with Pompe disease, and their caregivers, to participate in a 40-minute online survey about their experience. If you or a loved one are living with Pompe, you may be eligible to participate. Those who qualify and participate in the study will receive $90 as a thank you. All information and responses will remain confidential. Participants must be age 18 or older and live in the US.


You will be asked to join our community and answer a few quick questions to help match you to opportunities you may qualify for. You can opt out at any time by emailing

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