Medical Questions
For answers to your immediate medical questions, you can call the DBA nurse at 1-877-DBA-NURSE (1-877-322-6877).


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 the Annual DBA International Scientific Consensus Conference.

Diamond Blackfan Anemia Foundation (DBAF)*
Funds medical research projects, provides emotional support to families affected by DBA and organizes DBA family meetings.
Main number: 716-674-2818

* Together, the Daniella Maria Arturi Foundation (DMAF) and the Diamond Blackfan Anemia Foundation (DBAF) sponsor the DBA newsletter, a publication available to DBA families and supporters twice a year. To download current issues, go to the DBAF website at: http://www.dbafoundation.org/current_issues.html or the DMAF website at: http://www.dmaf.org/Links.asp.

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 collect accurate clinical and demographic data on DBA patients and their families.
Toll-Free Number: 888-884-DBAR (3227)


National Resource Centers

Children’s Hospital Boston
Ellis J.Neufeld MD, PhD
Associate, Professor of Pediatrics
Harvard Medical School
Associate Chief, Division of Hematology/Oncology
Main number: 617-355-8246

Schneider Children’s Hospital
Adrianna Vlachos, MD
Assistant Professor of Pediatrics
Albert Einstein College of Medicine
Head, Bone Marrow Failure Program
Director, Diamond Blackfan Anemia Registry
Main number: 718-470-3024

Stanford University Medical Center
Bertil Glader, MD, PhD
Stanford University School of Medicine
Lucile Packard Children’s Hospital
Professor of Pediatrics and Pathology
Division of Hematology/Oncology
Main number: 650-723-5535

University of Texas Southwestern Medical Center
George Buchanan, MD
Professor of Pediatrics
Director, Division of Hematology-Oncology
Department of Pediatrics
Main number: 214-456-2382


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, an electronic family support group
Blackfan@yahoogroups.com
An e-mail server that allows you to send one e-mail that automatically gets distributed to everyone subscribed to the list. This is a semi moderated website and e-mail group for DBA parents and patients. To subscribe, e-mail: blackfan-subscribe@yahoogroups.com, or go to the website at: http://health.groups.yahoo.com/group/blackfan/.

DBA21@yahoogroups.com
This is a semi moderated website and e-mail group for adult patients only. To subscribe, e-mail: dba21-subscribe@yahoogroups.com or go to the website at: http://health.groups.yahoo.com/group/dba21/.


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.

Government Organizations

Centers for Disease Control and Prevention (CDC)
Sally Owens, BSN, RN
Health Scientist, Division of Hereditary Blood Disorders
National Center on Birth Defects and Developmental Disabilities
Main Number: 404-718-8600

National Institute of Health (NIH)
National Heart, Lung and Blood Institute
Health Information Center
Provides information and resources.
Phone: 301-592-8573
TTY: 240-629-3255
 

Medical care provided at no charge to patients who meet criteria for NIH clinical trials
Phone: 301-496-3841
E-mail: mussel@mail.nih.gov
 
 

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Date: August 29, 2008
Content source: National Center on Birth Defects and Developmental Disabilities