Pompe.Community is not an advocacy organization. It is an infrastructure project with the hypothesis that if we build the “town square”, where everyone in the Pompe Disease Ecosystem is welcome, that it will be of service to the health of the ecosystem.

Community is everything in rare disease, and this community—architected by The Pompe Consortium—is formed to accelerate understanding of that which is unknown.

Whether you’re a newly diagnosed or experienced individual/family, an advocacy org leader, a researcher, a drug developer, etc… this community is for you.

A Town Square For Everyone

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The Data Project, enabled by

The Pompe.Community recognizes that data is a powerful vehicle to accelerate understanding.

RARE-X enables the acceleration of research by pooling data from individuals who choose to participate. On the RARE-X platform individuals who participate retain ownership of their data and how it is used.

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architected by

with support from

There are a variety of resources available to help you navigate this rare journey. The Pompe.Community resource list includes (organizations that provide support and advocacy for Pompe patients and their families, as well as information on clinical trials and research studies).

If you would like to be included or excluded from this list, please contact us.

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