Foundation to Host APBD Scientific and Community Conference

We are excited to share that we are hosting our virtual APBD Scientific and Community Conference on September 18-19, 2024.

Join us as we bring together our community – researchers, health care providers, industry partners, and individuals and family members impacted by APBD – to connect, to share, and to accelerate APBD and allied diseases research. 


During the two-day event, you will hear from:

  • clinicians and researchers about advances in foundational science, drug development, and clinical research
  • patients and caregivers about their lived experiences
  • community members about areas of much-needed collaboration


Click here to register



We look forward to sharing the conference agenda, confirmed speakers, and other updates in the coming days.

We're Looking for Sponsors!


Sponsoring the 2024 APBD Scientific and Community Conference is a great opportunity for you or your company to:  

  • promote your company’s brand
  • interact directly with healthcare professionals and patients 
  • demonstrate your support for the APBD and allied disease community.


Download the Sponsorship Form


Contact Anesa Kajtazovic at anesa@apbdrf.org with questions. Thank you for choosing to support the APBD Research Foundation!

Foundation Hosts “Building Strength and Power in Numbers” Focus Group to Bring Together the APBD and GSD IV Communities

On May 6, 2024, we hosted a virtual Focus Group that brought together, for the first time, over 50 participants representing the APBD and other Glycogen Storage Disease Type IV (GSD IV) communities. 


The participants included patients, family members, patient advocacy organization leaders, clinicians, and researchers from 13 countries.  


All GSD IV disorders, including APBD, are caused by mutations on the GBE1 gene. This results in many shared interests among community members. A recently completed study by the Broad Institute of MIT and Harvard estimates the global genetic prevalence of all GBE1 diseases, including APBD and other GSD IVs, at 26,000. To advance therapeutic development, we believe it is imperative to build bridges between the APBD and broader GSD IV community. 


Watch the recordings from researchers who spoke at the Focus Group


Read the Summary Report


We welcome the opportunity to strengthen and unite the APBD and GSD IV communities. It is through our strategic collaborations that we can gain momentum, build strength in numbers, accelerate research, and make treatments a reality.

APBD Research Foundation Documentary Selected for Screening at Global Genes’ Week in Rare Event

The APBDRF documentary, "Life Through a Lens," has been chosen as one of only three films to screen at the Global Genes Week in Rare Advocacy Summit on September 26th in Kansas City, Missouri. The documentary tells the story of the late Robert Zuckerman, who was an APBDRF Board member and renowned Hollywood photographer, as he navigates the challenging journey of a rare disease diagnosis.


Robert Zuckerman was not only an extraordinary photographer but also a remarkable human being, celebrated for his exceptional talent and his generous indomitable spirit. 


We miss you, Robert and remember your wise words “if it gets in the way it is the way.”



Watch a preview of the Documentary

Upcoming Events

From Chat events to workshops and scientific symposiums, the Foundation hosts programs for patients, caregivers, and health professionals which connect our community members and deepen the understanding of how APBD impacts lives.


These events offer peer support, opportunities to hear from health experts and Foundation leaders, and the chance to raise funds for APBD research. 

Caregiver / Family Chat

Aug. 8, 2024 7:30pm ET | 4:30pm PT

Sept. 12, 2024 7:30pm ET | 4:30pm PT


This Chat is hosted by volunteer moderator Linda Cedarbaum. To learn more and register for this event, email Linda at linda@apbdrf.org.

Patient Chat

Aug. 28, 2024 8pm ET | 5pm PT

Sept. 25, 2024 8pm ET | 5pm PT


This Chat is hosted by volunteer moderator Harriet Saxe. To learn more and register for this event, email Harriet at harriet@apbdrf.org.

We provide this FREE monthly newsletter resource to all of our community members.

This program is made possible by contributions to the APBD Research Foundation from donors like you.

Thank You! Text Link

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