For US residents only
Tools, resources, and organizations made for you
Discover downloadable materials, find financial assistance resources, and explore advocacy organizations designed to assist you on your journey.
Abdullah
Managing Pompe since 2007
Materials made for the Pompe community
A Visual Guide to Understanding Pompe Disease
Includes easy-to-understand information about Pompe disease.
Understanding and Managing Digestive Tract Signs and Symptoms
Provides information on how Pompe can affect the muscles involved in eating, and includes tips for managing digestive symptoms.
Travel Your Way Passport
Includes travel suggestions, tips, and resources for people with disabilities.
Information and Resources on Genetic Testing
Find information on genetic testing for Pompe disease and where to get tested.
Pompe Muscle Is Muscle Brochure
Understand the impact Pompe disease has on muscles in the body and learn where you can go to find more help.
Mental Wellness: A Guide for People Living With Rare Diseases
Provides information about how rare diseases affect mental health, along with resources and suggestions for finding support.
Interactive Tools
Pompe Discussion Driver
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.
Videos
Patrick
Ohio
Diagnosed with LOPD at age 34
How Regular Activity Fits into Your Pompe Plan
How Nutrition Fits into Your Pompe Plan
Financial assistance
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 the Rare Disease Tips page on NIH.gov.
The Assistance Fund Pompe Disease Financial Assistance Program
Patient Access Network (PAN) Foundation
Patient Advocate Foundation Co-Pay Relief
Accessia Health
I would suggest to anyone who is trying to deal with this on their own: If you aren’t feeling like you are making any progress, then you should never be afraid to ask for help. Never.
Pompe disease advocacy organizations
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.
Acid Maltase Deficiency Association (AMDA)
International Pompe Association
Pompe Alliance
Pompe Warrior Foundation
