our Data Collection HAS LAUNCHED!

As scientists strive to better understand H-ABC/TUBB4A Leukodystrophy and develop effective therapies, patient data is a critical part of accelerating their important work.

​H-ABC/TUBB4A families are excited to participate in the data collection to expand and improve medical research. By coming to our Rare-X data collection site you can begin the first step in making your privatized patient information available to researchers. By generating the most comprehensive H-ABC/TUBB4A Data Collection Program, we can accelerate the research and development of new drugs, devices, and other therapies. Only you hold the key to unlock future discoveries. 

​As a family affected by H-ABC/TUBB4A-related Leukodystrophy, you are invited and encouraged to participate in the H-ABC/TUBB4A Data Collection Program supported by the Foundation to Fight H-ABC and the UK H-ABC Foundation.  

Your participation is needed to:

​·    Inform researchers how H-ABC/TUBB4A-related Leukodystrophy changes over time

·    Enable better data to design and use in clinical trials

·    Give patients the opportunity to participate in clinical trials

·    Reduce the time it takes to study new medicines

·    Speed up the time to get treatments to patients

·    Enable the use of data as a placebo (instead of actual patients) in a clinical trial to researchers globally

This button takes you directly to the database:

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