Dear Friend,

You are a special part of our community. 

Your support and belief in our mission sustains our work on behalf of more than 34,000 people living with APBD and related diseases. Thanks to you, we are making real progress toward new treatments that are moving closer to fruition.

We are grateful for everyone — patients, families, friends, volunteers, staff, board members, medical and science advisors, industry friends, researchers, regulators, and allied rare disease partners.

From all of us to you and your loved ones, we hope your holiday season is full of light, happiness, and special moments!

Warm wishes,

The APBD Research Foundation Team

Foundation Launches GSD IV BioBank 

The APBD Research Foundation is excited to share some big news! We’ve launched the GSD IV BioBank in partnership with COMBINEDBrain.

Our new BioBank connects patient data, samples, and surveys. It enhances and accelerates researchers’ access to high-quality patient samples and coordinated survey data, facilitating better planning for upcoming natural history studies and biomarker and clinical endpoint discovery. 

In early November, we started the BioBank with a small pilot project using five pioneering patients from our community and their families. Their experiences are helping us improve and make the process easier for others who join later. 

Thanks to these enthusiastic volunteers, we’re now getting ready to expand the GSD IV BioBank to include more members of our community. Stay tuned for our call to identify the next round of BioBank volunteers!

Why You Should Create Your “Clinical Research ID”

We understand how heartening it is for families to see patient data influence the direction of research. A challenge to rare disease research is that patients are geographically dispersed across the country and researchers are often limited to the small group of patients that may live in the vicinity of their academic institutions. Additionally, sharing data across these institutions is not impossible, but it comes with hurdles and delays.

The most meaningful advances happen when our researchers are able to connect the data dots across different locations and studies.

That’s why we’re encouraging you to get your CRID -- it takes just a few minutes! It’s a simple, unique 8-character code that links your data across different research projects—without sharing your name or personal details. It helps researchers learn more and find patient-focused ways to direct their attention.

Thank you for helping us make research stronger!

Give and Double Your Impact on #GivingTuesday!

GivingTuesday, held every year on the Tuesday after Thanksgiving, is a global day of generosity that empowers people and organizations to transform lives and communities.

This year, your impact goes even further. From now until December 2nd, every gift you make will be matched dollar-for-dollar, up to $60,000!

Your support helps keep our APBD programs going and growing! The money raised will fund research, offer help to patients and families, and bring forth future treatments. None of this life-changing work would be possible without you.

Make a gift and double your impact

Upcoming Events

The Foundation hosts talks, workshops, and scientific meetings for patients, caregivers, health professionals, and researchers. These programs connect our community members and deepen the understanding of how APBD impacts lives.

Patient Chat

Dec. 17, 2025 | 9am PT| Noon ET 

Jan. 28, 2026 | 9am PT | Noon ET 

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

Caregiver / Family Chat

Dec. 11, 2025 | 4:30pm PT | 7:30pm ET 

Jan. 8, 2026 | 9:30am PT | 12:30pm ET

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

Planning Ahead is One of The Greatest Gifts You Can Give Your Loved Ones

We provide this FREE monthly newsletter resource to all of our GSD IV and allied disease community members. This resource is made possible by contributions to the APBD Research Foundation from donors like you. Thank You!