0
Skip to Content
Adult Polyglucosan Body Disease (APBD) Research Foundation
History
Mission
Board Members, Volunteers, and Staff
Scientific and Medical Advisory Board
Report: 15 Years of Progress
News Releases
Newsletter Archive
What is APBD?
Signs and Symptoms
APBD Symptom Checker
Brochure
Testing Info
APBD and GSD IV Guideline
Newly Diagnosed?
APBD and the Deep Intronic GBE1 Gene Mutation
Navigating a Presymptomatic Diagnosis
Create your Clinical Research ID
Health Care Providers Directory
Personal Narratives
Natural History Study
Patient Registry
NORD Living Rare Study
State of the Science
Publications
Research Highlights
Past Grant Recipients
Q&A interviews
Sign up for Newsletter
Interested in Volunteering?
Contact Us
Patient Chat
Family/ Caregiver Chat
Scientific Conferences
Patient Listening Sessions with the FDA
Workshops
APBD Tour de Friends Rally for Research
Rare Disease Day
Other Events
Donate Now
Tribute and Memorial Gifts
Recurring Donations
APBD Planned Giving Program
Make a Gift with IRA
DONATE
Adult Polyglucosan Body Disease (APBD) Research Foundation
History
Mission
Board Members, Volunteers, and Staff
Scientific and Medical Advisory Board
Report: 15 Years of Progress
News Releases
Newsletter Archive
What is APBD?
Signs and Symptoms
APBD Symptom Checker
Brochure
Testing Info
APBD and GSD IV Guideline
Newly Diagnosed?
APBD and the Deep Intronic GBE1 Gene Mutation
Navigating a Presymptomatic Diagnosis
Create your Clinical Research ID
Health Care Providers Directory
Personal Narratives
Natural History Study
Patient Registry
NORD Living Rare Study
State of the Science
Publications
Research Highlights
Past Grant Recipients
Q&A interviews
Sign up for Newsletter
Interested in Volunteering?
Contact Us
Patient Chat
Family/ Caregiver Chat
Scientific Conferences
Patient Listening Sessions with the FDA
Workshops
APBD Tour de Friends Rally for Research
Rare Disease Day
Other Events
Donate Now
Tribute and Memorial Gifts
Recurring Donations
APBD Planned Giving Program
Make a Gift with IRA
DONATE
Folder: About Us
Back
History
Mission
Board Members, Volunteers, and Staff
Scientific and Medical Advisory Board
Report: 15 Years of Progress
News Releases
Newsletter Archive
Folder: What is APBD
Back
What is APBD?
Signs and Symptoms
APBD Symptom Checker
Brochure
Testing Info
APBD and GSD IV Guideline
Folder: Diagnosed
Back
Newly Diagnosed?
APBD and the Deep Intronic GBE1 Gene Mutation
Navigating a Presymptomatic Diagnosis
Create your Clinical Research ID
Health Care Providers Directory
Personal Narratives
Natural History Study
Patient Registry
NORD Living Rare Study
Folder: Research
Back
State of the Science
Publications
Research Highlights
Past Grant Recipients
Q&A interviews
Folder: Get Connected
Back
Sign up for Newsletter
Interested in Volunteering?
Contact Us
Folder: Events
Back
Patient Chat
Family/ Caregiver Chat
Scientific Conferences
Patient Listening Sessions with the FDA
Workshops
APBD Tour de Friends Rally for Research
Rare Disease Day
Other Events
Folder: Ways to Give
Back
Donate Now
Tribute and Memorial Gifts
Recurring Donations
APBD Planned Giving Program
Make a Gift with IRA
DONATE

Thank you for subscribing to our newsletter!

  • Check out our Newsletter Archive

  • Have you been recently diagnosed?  

  • Did you know that misdiagnosis is a common part of the APBD journey?

  • Managing APBD requires working with a team of healthcare professionals

  • Featured Research Highlights

 

Get Connected

Featured
Sign up for Newsletter
Interested in Volunteering?
Contact Us
 
 

Subscribe to our newsletter.

Sign up with your email address to receive news and updates.

Thank you for subscribing to our newsletter!

 

APBD Research Foundation
info@APBDRF.org | 646.580.5610
Mailing Address: APBD Research Foundation, 2257 East 63 Street, Brooklyn, NY 11234
Address for sending your charitable gift by mail: APBD Research Foundation, C/O Sharon Steinberg, 526 E. 20th Street, #1D, New York, NY 10009

© 2026 APBD Research Foundation is a tax exempt 501(c)3 nonprofit organization and our Identification Number (EIN) is 20-3609790. Contributions are tax deductible to the extent permitted by law.

Please be advised that this web site exists as a source of general information only. Any reference to a product, process, service or company does not constitute an endorsement by the APBD Research Foundation. Please consult your physician before starting a new treatment, diet or fitness program.

NORD and the NORD logo are registered trademarks of the National Organization for Rare Disorders. NORD is a registered 501(c)(3) charity.