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.

Mike

(1957-2022)
A friend to the Pompe community

Mike

Materials made for the Pompe community

Pompe Visual Guide

A Visual Guide to Understanding Pompe Disease

Includes easy-to-understand information about Pompe disease.

Pompe Digestive Guide

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.

Pompe Travel Guide

Travel Your Way Passport

Includes travel suggestions, tips, and resources for people with disabilities.

Information and Resources on Genetic Testing

Information and Resources on Genetic Testing

Find information on genetic testing for Pompe disease and where to get tested.

Pompe Muscle Is Muscle Brochure

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.

Tools

Pompe Discussion Driver

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

Maddie

Florida
Diagnosed with LOPD at age 11

Emma

Pennsylvania
Diagnosed with LOPD at age 14

Mike

(1957-2022)
A friend to the Pompe community

How Regular Activity Fits into Your Pompe Plan

How Regular 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

The Assistance Fund Pompe Disease Financial Assistance Program

The Assistance Fund

Patient Access Network (PAN) Foundation

Patient Advocate Foundation

Patient Advocate Foundation Co-Pay Relief

Patient Advocate Foundation

Patient Services Incorporated (PSI)

Mike quote

Mike was an inspiration to the Pompe community. He never let the obstacles he faced dampen his spirit or sense of humor.

Mike died from Pompe in March 2022. His influence will endure.

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)

Acid Maltase Deficiency Association (AMDA)

International Pompe Association

International Pompe Association

Pompe Alliance

Pompe Alliance

Pompe Warrior Foundation

Pompe Warrior Foundation

United Pompe Foundation

United Pompe Foundation

Sign Up to Stay connected

Want to stay informed on the latest Pompe disease news and developments from Amicus Therapeutics? Sign up to have updates sent right to your inbox.

*Required fields

Age Consent
*
Legal Consent
*