A global effort to advance research, improve care, and empower individuals affected by Bloom syndrome.
International Bloom Syndrome Registry
The International Bloom Syndrome Registry (IBSR) is a secure, online platform that collects medical, genetic, and lived experience data from individuals with Bloom syndrome or Bloom-like syndromes. Your participation helps researchers better understand the condition and opens the door to future studies, improved care guidelines, and the development of new treatments. The Registry is free and open to Bloom individuals of all ages worldwide. Join us today.
For Patients
Get Involved
Information collected during this study may be used to help provide opportunities for patients and researchers to collaborate in the rare disease community.
For Researchers
Drive Research
This is a unique rare disease patient registry. Are you interested in using our data to further your rare disease research?