Recently Diagnosed with APBD?
You Are Not Alone.
For most people, the first time they hear the words Adult Polyglucosan Body Disease, or APBD, is in the midst of a devastating diagnosis for themselves or someone they love. A diagnosis that brings more questions than answers and reshapes what you think life looks like in an instant.
At the APBD Research Foundation, we recognize the weight of this moment. We are here to help carry some of that burden by offering a centralized source of clear, accessible information and a compassionate community that understands what you're facing. You are now part of a community that will always stand with you and fight for a better future.
Founded in 2005 by patients and their families, we have since built strong networks of patients and researchers in major cities across the United States, Canada, South America (especially Colombia, Argentina, and Brazil), the UK, France, Germany, the Netherlands, Israel, and China.
Every step we take as an organization is in service to the patients and families whose lives have been forever changed by this diagnosis, offering guidance, connection, and hope at every step.
First Steps…
Find a doctor familiar with APBD, or share this document with your current doctor
Connect with our community at a monthly patient or caregiver chat
When You’re Ready For More…
Find out if there are any ongoing research studies you may qualify for
If you don’t find the answers you need here, please don’t hesitate to reach out to us at info@apbdrf.org, or fill out the form below.
Connect With Us
Please fill out the form below, and an APBDRF staff member or volunteer will respond as soon as possible to connect you with more specific information, support, and resources.
Updated: April 2025