We post timely action items on our Facebook page. Follow us on Facebook to receive the latest information.

New to advocacy? Executive Director Heather Shorten and Board Member Jennifer Lowe Davis have an online tutorial about how to effectively advocate at any level of government. Click here to access the Powerpoint.

We work with other organizations and industry to advance good public policy for Pompe and the rare disease community. Some of those organizations include NORD and Every Life Foundation.