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We are growing a global community of those affected by XLA to answer three main questions
How many people live with XLA globally?
We want to capture XLA's true population size, connect families, and examine the countless complexities that come with XLA Life.
What is the best way to improve XLA quality of life?
Age of diagnosis has been cited as an important factor in quality of life, but how can we best improve our XLA Life after diagnosis?
What initiatives work for XLA and can they be applied to other rare diseases?
Our initiatives are built to be translated into other rare diseases. Replicability of efforts will have the greatest impact on healthcare.
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