We are pleased to announce the launch of the new International Bloom Syndrome Registry (IBSR)!
The IBSR creates a platform for patients around the world to strengthen their voices and share information about Bloom syndrome, a rare genetic disorder that causes growth deficiency, immune dysfunction, sun-sensitive skin changes, and a dramatically increased risk of early-onset cancer. Bloom syndrome currently has no cure. Designed with the input of scientists, clinicians, and families, this global resource will provide data for researchers to use to advance drug development and treatment options to help improve care for individuals with Bloom syndrome. Join now and let your data tell your story!
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