The Bloom's Syndrome Association is pleased to partner with the Bloom's Syndrome Registry to present a program called Ask the Registry. This program provides a practical means for members of the Association to ask a variety of questions about Bloom's syndrome and Bloom's syndrome research and receive authoritative answers from the Bloom's Syndrome Registry. The program is available in two formats:
- As Sharable Content: where a running history of all questions and answers will be maintained online. Questions may be edited for clarity or consolidated and will be presented anonymously. Additionally, this program will help the BSA develop for future publication a comprehensive handbook for families, physicians, and educators regarding the medical, scientific, personal, and legal aspects of Bloom’s syndrome.
- In Confidence: where the Registry responds directly and exclusively to the submitter via email.
Notes: Must be a member of the Bloom's Syndrome Association to participate. The Registry will attempt to answer as many questions as possible on a schedule TBD. The Registry will not address questions seeking any personal advice (medical or otherwise) and, along with the BSA, assumes no liability for the accuracy or individual interpretation of any information or opinions it provides. See, also, disclaimers.