Parent Resources
Please Contact us to request details on resources available to you.
Facebook Groups
parent and family member pages
Please Contact us to request access to these private pages.
RESEARCH H-ABC
Join a private Facebook Group dedicated to share and find information tied to H-ABC research.
TUBB4A ADVOCACY GROUP
This Facebook Group is dedicated to bringing families and interested advocates together to advocate as a group to raise awareness and promote more attention to and funding for research for this progressive neurological condition tied to the TUBB4A gene mutation.
H-ABC NATURAL HISTORY STUDY
As part of an ongoing effort to launch a robust Natural History Study on H-ABC, the team at the Children's Hospital of Philadelphia (CHOP) is reaching out to families of individuals affected by H-ABC for information on the symptoms and problems they have experienced as part of this diagnosis.
Click the button below to find out more and to complete the survey!
New diagnostic codes effective 2023
Equipment Connections for Children
Equipment Connections for Children has donated over 2,000 pieces of equipment to over 1500 children living with disabilities, saving their families an estimated $2.5 million. They connect costly adaptive equipment from children with disabilities who outgrow the equipment to other children who need it.
The Foundation also applies for grants to help support families in need - go to our contact page to reach us.