Links to Other Websites

Medical Questions

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.

http://www.facebook.com/daniellafoundation
http://www.twitter.com/DMAFoundation

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.

http://www.facebook.com/dbafoundation
http://www.twitter.com/DBAFoundation

DBA Resources

Download and Print this fact sheet.

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.

National Registry

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)

Support Services

Camp Sunshine
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

Blackfan
This is a semi-moderated website and e-mail group for DBA parents and patients.
To subscribe, e-mail: blackfan-subscribe@yahoogroups.com.

DBA21
This is a semi-moderated website and e-mail group for adult patients with DBA.
To subscribe, e-mail: dba21-subscribe@yahoogroups.com.

Blood Transfusion

National Library of Medicine
MedlinePlus
Information and resources.

Bone Marrow/Stem Cell Transplant

BMT InfoNet
Information and support for transplant patients and their families.
Phone: 1-847-433-3313
Toll-free: 1-888-597-7674 (during regular business hours)
E-mail at: help@bmtinfonet.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.
Phone: 1-800-627-7692
Office of Patient Advocacy: 1-888-999-6743

Cancer

American Cancer Society
Publications on cancer, treatment options, patient care, and support groups.
Phone: 800-227-2345

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.

Rare Diseases

National Institutes of Health
Office of Rare Diseases
Information about rare diseases, including links to support groups.

National Organization for Rare Disorders (NORD)
Information and patient networking.
Phone: 800-999-6673 or 203-744-0100
Email: ORPHAN@rarediseases.org

Health Insurance

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.