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As scientists strive to better understand H-ABC/Tubb4a Leukodystrophy and develop effective therapies, collecting patient data is a critical part of accelerating their important work.

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H-ABC and Tubb4a patient data collected on this website is held in a secure and centralised database managed by H-ABC Foundation UK. It records data on H-ABC/Tubb4a patients. Non-identifiable data is used to help support medical research.  

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If you submit data below you have agreed for your data to be shared with relevant organisations that are working on treatment options for H-ABC/Tubb4a. H-ABC Foundation UK will share your information with Synaptix Bio who are working to bring a clinical trial to the H-ABC community, as well as other clinicians and organisations that could help develop future treatments for H-ABC/Tubb4a.

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All data will be collected in line with GDPR guidelines. The information requested below is in respect of the H-ABC patient and if under 18 can be completed by their parent/guardian.

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Thank you! Without patient support moving forward to treatment options would not be possible.

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