Support for Families
Newly Diagnosed with H-ABC.
H-ABC Family Support
Being told your child has H-ABC/ TUBB4A can feel overwhelming and isolating. We understand, because many of us have been where you are now. This page is your starting point for clear, practical resources. Here you will find:
Guides and tools created by and for families living with H-ABC
Firsthand stories that highlight what to expect and how others manage daily life
Links to medical, research, and support resources you can rely on
Our goal is simple: to connect you quickly with information collected from parents like you to help you care for your child and your family.
Quick Navigation
👉 What is H-ABC/TUBB4A? Understand the diagnosis and what it means.
👉 Living with H-ABC/TUBB4A Practical tips and daily life guidance.
👉 H-ABC Stories Read how other families are living, loving, and thriving.
👉 Family Participation in Research Learn about research available to you.
We’re In This Together
The Foundation is more than just an information source — we are a community bound by shared experience and unwavering support. We connect families to one another so no one faces H-ABC alone. Through sharing stories, offering guidance, and listening with understanding, we build strength and hope.
Together, we stand united to advance research, advocate for better care, and create a brighter future for everyone affected by H-ABC. Your journey matters to us, and we are here to walk beside you every step of the way.
Share Our Story, Spread Awareness
Your voice can help others learn about H-ABC and find support sooner. Share our Foundation’s accomplishments and story to raise awareness, inspire hope, and strengthen our community.
👉 See our accomplishments
👉 Read our story
Connect With Us Today
You’re not alone in this journey.
Use the form below to ask us questions,
share information with us,
receive updates,
and stay informed about all things related to H-ABC.
We’re here to support you every step of the way.