A Patient's Story: Sarah

One of the highlights of our May APBD Scientific & Community Conference was Sarah's description of her life with APBD. The practical insights she offered to people who've been recently diagnosed with APBD are both real and relevant.

Take a moment to watch Sarah and others share their experiences...  

Meet Camille Keene!

We are pleased to introduce you to Camille Keene, the newest addition to our team. We partnered with Second Day to find Camille, who is studying Political Science at Howard University. Camille will help us develop communications that support our efforts to grow our programs and make treatments and a cure a reality. Read more here…

Upcoming Rare Disease Conference

You may find this upcoming scientific conference beneficial and informative:

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 a chance to hear from Foundation leaders. Our upcoming events include:



Caregiver / Family Chat

November 10, 2022, 7:30pm ET | 4:30pm PT

December 8, 2022,  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

October 26, 2022, 8pm ET | 5pm PT

November 23, 2022, 8pm ET | 5pm PT

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

We welcome new participants!

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