Resources for Patients & Caregivers
Welcome to the Bloom syndrome community. We recognize that this may be a scary and confusing time in your life. We know how frustrating it can be that your doctors may not have much guidance about Bloom syndrome, as there is limited and often outdated information. Please know we have been where you are now. You are not alone on this journey! The Bloom Syndrome Association (BSA) is here for you with a wealth of resources for both you and your medical providers.
It can be overwhelming to keep track of everything, especially in this moment: take a look at the Checklist we’ve developed as a reference.
We have developed a comprehensive Bloom syndrome Patient and Family Handbook. The Handbook is intended to summarize the current state of understanding of Bloom syndrome in plain language; to highlight what is known and what is not known, and provide some “insider” information based on our experiences and those of others.
The BSA also maintains a list of “ambassadors” in different geographic locations. These ambassadors are here to help you on this journey, whether to answer questions, give guidance, share their story, or to just listen. While we know that you likely have family and friends who are there for you, we have found that connecting with a fellow ‘Bloom’ family provides a unique connection and understanding. Feel free, when you are ready, to contact us so we can arrange a meeting.
Please also reference the ‘Care and Management’ page. This page contains the latest care and health supervision strategies for individuals with Bloom syndrome. Individuals with Bloom syndrome, along with their families and medical providers will find the information invaluable.
Dr. Nicole Kucine is an Associate Professor of Clinical Pediatrics at Weill Cornell Medicine, where she also serves as the Director of the Bloom Syndrome Registry. Please do not hesitate to reach out to Dr. Kucine. Her contact information is:
Nicole Kucine, M.D., MS
Associate Professor of Clinical Pediatrics
(Specialty in Hematology-Oncology)
Director, Bloom Syndrome Registry
Weill Cornell Medicine
Department of Pediatrics
505 E. 70th Street, 3rd floor, Box 128
New York, NY 10021
The BSA is here to support you and your family. Sign up for our mailing list and please don’t hesitate to reach out to us at any time.