Community Resources
Patient & Family Handbook
Whether you or a loved one has just received a diagnosis of Bloom syndrome or you’ve known about Bloom syndrome for many years, you likely have a lot of questions. Following a meeting of several Bloom syndrome families at the 2017 Pediatric Cancer Nanocourse in Beaverton, Oregon, it was decided that compiling a collection of “frequently asked questions” in the form of a handbook would be helpful for the community.
The handbook is intended to summarize the current state of understanding of Bloom syndrome in plain language, highlight what is known and what is not known, and also provide some “insider” information for everyday challenges and experiences. It is designed to be a “living document” and to be updated frequently. In order to keep it current and make it most useful for everyone, we seek your input in the form of comments, additions, personal anecdotes, and corrections!
If you are interested in accessing this Handbook in other languages besides English, please contact us.
2026 The Unofficial Guide to Bloom Syndrome
A Handbook for Families and Persons with Bloom Syndrome, Written by Families and Persons with Bloom Syndrome
Disclaimer: Information provided in this handbook about medications, treatments or products should not be construed as medical instruction or endorsement. Always consult your physician before taking any action based on this information.
