Links to Other Websites
For answers to your immediate medical questions, you can call the DBA nurse, Ellen Muir, RN, MSN, at 1-877-DBA-NURSE (1-877-322-6877) or the nurse at one of the DBA national resource centers near you. For additional information and support, call the DBA Foundation at 716-674-2818.
Support from Other Parents
To talk with a parent of a child with DBA, call the DBA Foundation at 716-674-2818.
Foundations and Organizations
Daniella Maria Arturi Foundation (DMAF)
Provides financial support for the research of DBA, increases awareness of DBA among medical professionals and federal policy makers, and coordinates and sponsors annual DBA Scientific and Clinical Meetings. DMAF sponsors a comprehensive "DMA 4 DBA" annual newsletter as well as online news and e-blasts updating the DBA community about the latest in DBA news. Visit www.diamondblackfananemia.org to download current issues of the DMA 4 DBA newsletter and “subscribe” to be sure you receive all DBA news, events and updates.
Diamond Blackfan Anemia Foundation (DBAF)
Dedicated to providing support for DBA patients, families, and research. In partnership with DBA families, the DBAF funds worldwide research projects, provides educational materials and emotional support to families, networks DBA families, sponsors DBA family meetings including Camp Sunshine retreats (www.campsunshine.org), and publishes the comprehensive biannual DBA Newsletter and an informative monthly e-newsletter. DBAF is committed to educating, empowering, and supporting DBA patients and their families. For additional information and to register with the DBAF, please call: 716-674-2818 or visit www.dbafoundation.org.
Diamond Blackfan Anemia and You
Dedicated to helping educate people about this rare blood disorder and topics that are often associated with not only individuals with DBA, but their friends and families as well.
Diamond Blackfan Anemia Registry of North America (DBAR)
Established in 1993 to improve the understanding of DBA. The DBAR collects clinical data on DBA patients and their families and offers participation in research protocols. Toll-Free Number: 888-884-DBAR (3227)
Camp Sunshine provides respite, support, joy and hope to children with life-threatening illnesses and their immediate families through various stages of a child’s illness. The year-round program is free of charge to all families, and includes 24-hour onsite medical and psychosocial support.
Main Number: 207-655-3800
Web-based Support Groups
This is a semi-moderated website and e-mail group for DBA parents and patients.
To subscribe, e-mail: firstname.lastname@example.org.
This is a semi-moderated website and e-mail group for adult patients with DBA.
To subscribe, e-mail: email@example.com.
National Library of Medicine
Information and resources.
Bone Marrow/Stem Cell Transplant
Information and support for transplant patients and their families.
Toll-free: 1-888-597-7674 (during regular business hours)
E-mail at: firstname.lastname@example.org
National Bone Marrow Transplant Link
Helps patients, as well as their caregivers, families and the health care communities meet the many challenges of stem cell transplant by providing information and support services.
Phone: 1-800-LINK-BMT ( 800-546-5268) or 248-358-1886
National Marrow Donor Program (NMDP)
Provides a registry of potential volunteer stem cell donors, resources for patients and physicians, and conducts research.
Office of Patient Advocacy: 1-888-999-6743
American Cancer Society
Publications on cancer, treatment options, patient care, and support groups.
National Cancer Institute
Etiologic Investigation of Cancer Susceptibility in Inherited Bone Marrow Failure Syndromes (IBMFS). This is a study of the epidemiology and natural history of DBA in patients and their families.
National Institutes of Health
Office of Rare Diseases
Information about rare diseases, including links to support groups.
COBRA Health Insurance
COBRA provides certain people with temporary continuation of health coverage at group rates.
Medicaid Health Insurance
Medicaid health insurance provides health care coverage for some people who cannot afford it.
- Centers for Disease Control and Prevention
National Center on Birth Defects and Developmental Disabilities
Division of Blood Disorders
1600 Clifton Road
Atlanta, GA 30333
TTY: (888) 232-6348
- Contact CDC-INFO