Watch the full event wrap-up video here!

2023 Million Dollar Bike Ride Raises $97,000 for Rare Disease Research

We had our largest group yet: 290 eager and imaginative riders, walkers, and donors on the APBD Tour de Friends team! Some of our riders were on the ground in Philadelphia bright and early and ready to roll in support of APBD research. A few riders came in all the way from New York and Texas!  With your support we were able to raise $97,000 for research grants in 2024.

We extend our thanks to our supporters. We appreciate all who work to defeat APBD!

Paul Ashley Joins the APBD Research Foundation's Board of Directors

The APBD Research Foundation is delighted to announce that Paul Ashley has joined the Board of Directors.

“We are thrilled to welcome Paul to the Board of Directors. He brings extensive business development and strategic communications skills and his personal journey with APBD,” said co-founder and co-president Emil Weiss.

Click here to read more...

Deberah Goldman Accepted into Global Genes RARE 2023 Compassion Program

We're excited to share that Deberah Goldman, PhD, Vice President of the APBD Research Foundation, has been accepted into Global Genes 2023 RARE Compassion Program. The voluntary program aims to foster meaningful relationships between medical students and individuals with rare diseases. By sharing her APBD journey and the challenges of rare diseases in general, Deberah is working to better inform aspiring medical professionals about diagnosis, daily life, and what it means to be rare.

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

July 13, 2023, 7:30pm ET | 4:30pm PT

August 10, 2023, 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

July 26, 2023, 8:00pm ET | 5:00pm PT

August 23, 2023, 8:00pm ET | 5:00pm PT

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

Connect with Us

info@apbdrf.org | 646.580.5610 | apbdrf.org

Participate in Research -- Join Our Patient Registry!

Give Today to Support Your #1 Cause