Discover downloadable materials, find financial assistance resources, and explore advocacy organizations designed to assist you on your journey.
Managing Pompe since 2007
Includes easy-to-understand information about Pompe disease.
Provides information on how Pompe can affect the muscles involved in eating, and includes tips for managing digestive symptoms.
Includes travel suggestions, tips, and resources for people with disabilities.
Find information on genetic testing for Pompe disease and where to get tested.
Understand the impact Pompe disease has on muscles in the body and learn where you can go to find more help.
An interactive tool that can help you track symptoms or any changes you may be experiencing, and provide useful tips for your next doctor appointment.
Diagnosed with LOPD at age 34
Your Pompe disease treatment plan may require a variety of different medical expenses, including prescription co-pays, assistive devices, lab tests, and more. It’s important to recognize that there are resources available to help cover these costs, including resources for those who are underinsured or uninsured.
Find more information about financial assistance for rare diseases by visiting theon NIH.gov.
Self-advocacy starts with knowing where to look. The following organizations may be able to help. You are also encouraged to explore Pompe disease communities on Facebook to connect with others and find information that may be relevant to your experience.