Rare-X Data Collection Program for H-ABC / TUBB4A
Our RARE-X Data Collection HAS LAUNCHED!
Accelerating Research Through Family Participation
As scientists work tirelessly to understand H-ABC/TUBB4A-related leukodystrophy and develop effective therapies, patient data plays a crucial role in speeding progress.
Families affected by H-ABC/TUBB4A are encouraged to participate in the Rare-X Data Collection Program — a vital step to expand and improve medical research worldwide.
Why Your Participation Matters
By sharing your privatized patient information with researchers, you contribute to a comprehensive H-ABC/TUBB4A database that supports:
Tracking disease progression over time
Improving clinical trial design and therapy development
Expanding patient access to clinical trials
Shortening research and drug development timelines
Speeding up delivery of new treatments
Providing anonymized data as placebo alternatives in clinical trials
Rare-X: Advancing
H-ABC/TUBB4A Research Together
The Foundation to Fight H-ABC/TUBB4A and the UK H-ABC Foundation support this program, uniting families globally in the fight against these rare leukodystrophies.
Get Involved
Your involvement is essential. By participating, you become a key part of unlocking future discoveries and advancing treatments for all affected by H-ABC / TUBB4A.
Access the Rare-X Program Here: