The Pompe Consortium embodies the intersection of the Pompe Disease ecosystem—patients, academia, industry, advocates, researchers, regulators—with the explicit purpose to accelerate community and knowledge development towards supporting maximum ecosystem health.

Pompe Consortium

Our competition is against the unknown, not each other

An ecosystem that fosters innovation & creativity will support an accelerated cycle of curiosity + resolution

Patients are critical partners & drivers in research

Patients should own & steward their data

Data only has value when used - it should be shared & discoverable wherever possible

and it should be easy to do so, with a feedback loop to encourage participation (both ways)

Governance should be supportive & adaptable to an evolving landscape

Including protections for the interests of all members of the ecosystem

Our competition is against the unknown, not each other

An ecosystem that fosters innovation and creativity will support an accelerated cycle of curiosity + resolution

Patients are critical partners and drivers in research

Patients should own and steward their data and it should be easy to do so, with a feedback loop to encourage participation (both ways)

Data only has value when used - it should be shared and discoverable wherever possible

Governance should support the above, and be adaptable to an evolving landscape Including protections for the interests of all members of the ecosystem