Newly Diagnosed?

We know that a new diagnosis of BCAP31-related disorder can feel very overwhelming and lonely, as not much is known or published about the disease. We hope this page can serve as a helpful resource based on real families' experience navigating a BCAP31 diagnosis. We intend to further crowd source this page over time.

1. Join Our Patient Registry

Stay in the know about research opportunities and help us keep track of this growing community. Your contact information will not be shared with any third parties without your explicit permission.

JOIN REGISTRY

2. Connect With Other BCAP31 Families

Join the private BCAP31 Parent Support Group on Facebook. Connect with other impacted families from around the globe for peer-to-peer support.

JOIN FACEBOOK GROUP

3. Submit Your Story

So much of the currently published medical studies feature patients with the most severe forms of the disease and don’t represent the full array of our lived experiences. By sharing your journey, we can better understand the disease, celebrate resilience, and foster a sense of togetherness.

SUBMIT YOUR STORY

4. Download Our Day-to-Day Living Guide

Learn what therapies, medications, durable medical equipment and other supports have helped patients and families following diagnosis.

DOWNLOAD GUIDE