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.

The word 'RARE' stylized with a large 'X' made of multicolored confetti or small shapes.

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:

RARE-X DATA COLLECTION PROGRAM