Adult Polyglucosan Body Disease Research Foundation (APBDRF)
Adult Polyglucosan Body Disease (APBD) is a rare inherited disorder that affects the nervous system. It presents as early as age 35 and progresses relentlessly. People with this condition lose their ability to walk, lose bladder/bowel control, often experience unusual fatigue, and may have problems with cognition. A variety of other functions impacted by the nervous system may also be impacted.
The Adult Polyglucosan Body Disease Research Foundation is dedicated to finding a cure for APBD, while improving the lives of those affected.
APBD Patient Chat: The GHF Study, December 18, 2024
APBD Patient Chat: Understanding Biomarkers, November 20, 2024
FDA patient listening session
Closing Remarks by Michael Canmann: 2024 APBD Scientific and Community Conference
Publications to Look Out For: 2024 APBD Scientific and Community Conference
“Next Generation” Researchers Share: 2024 APBD Scientific and Community Conference
Patient and Caregiver Panel: What Do We Want Out of a Treatment?
Up-and-Coming Biomarkers for Neurodegenerative Diseases
The Urgent Need for Biomarkers for Clinical Trial Readiness
Strategies for Advancing APBD and Rare Disease Research - A Conversation with the NIH and the FDA
A Caregiver's Perspective on APBD: 2024 APBD Scientific and Community Conference
Welcome Remarks by Natacha Pires: 2024 APBD Scientific and Community Conference
The Importance of Genetic Screening & Molecular Testing
Strategies for Advancing APBD and Allied Diseases Research
Developing an Antisense Oligonucleotide Therapy for APBD Patients with the Intronic Mutation
Developing GHF-201 for Clinical Trials: 2024 APBD Scientific and Community Conference
Emerging Therapies in Development for APBD: 2024 APBD Scientific and Community Conference
Updates from the Recent Million Dollar Bike Ride Pilot Grant Awardees
A Patient's Lived Experience: 2024 APBD Scientific and Community Conference
Welcome Remarks by Jeff Levenson: 2024 APBD Scientific and Community Conference
"Life Through a Lens" Documentary Trailer
What's Needed to Better Understand APBD and GSD IV - Natural History Study
Treatment Approaches
APBD/GSD IV Clinical Practice Guideline
How Many People Live with GSD IV and APBD - A Global Genetic Prevalence Study
Where GSD IV and APBD Align
Speech and Swallowing Disorders in APBD, Patient Chat April 24, 2024
Patient Chat: Topic: APBD Genetics: Genes, Enzymes, and Research, Oh my! (December 13, 2023)
Patient Chat November 2023
How Physiotherapy Can Help Mitigate APBD Symptoms (June 28, 2023)