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Registries
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: 1-888-884-DBAR (3227)
National Cancer Institute
http://www.marrowfailure.cancer.gov/
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.
Foundations
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.
Web-based Support Groups
Blackfan Anemia, email support group
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
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/
CaringBridge
This is a site for free, personalized websites that support and connect loved ones during critical illness, treatment and recovery. You can read about others and their stories and/or create your own site.
To become a "Fan" of the Diamond Blackfan Anemia Foundation on Facebook click here.
To join our "Cause" on Facebook click here.
http://twitter.com/DBAFoundation
Do you twitter? If so, follow us and keep up to date on Diamond Blackfan Anemia tweets.
Blood Transfusion
National Library of Medicine
http://www.nlm.nih.gov/medlineplus/bloodtransfusionanddonation.html
Blood transfusions and donations
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 (1-800-546-5268) or 1-248-358-1886
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: 1-800-227-2345
Government Organizations
Centers for Disease Control and Prevention (CDC)
http://www.cdc.gov/ncbddd/hbd/dba/default.htm
Sally Owens, BSN, RN Health Scientist, Division of Hereditary Blood Disorders National Center on Birth Defects and Developmental Disabilities Main Number: 1-404-718-8600
National Institute of Health (NIH)
National Heart, Lung and Blood Institute Health Information Center Provides information and resources. Phone: 1-301-592-8573 TTY: 1-240-629-3255
Medical care provided at no charge to patients who meet criteria for NIH clinical trials:
Phone: 1-301-496-3841
Social Security
Health Insurance
COBRA Health Insurance
www.dol.gov/ebsa/faqs/faq_consumer_cobra.html
COBRA provides certain people with temporary continuation of health coverage at group rates.
Medicaid Health Insurance
www.cms.hhs.gov/home/medicaid.asp
Medicaid health insurance provides health care coverage for some people who cannot afford it.
Hematology
American Society of Hematology (ASH)
The mission of the American Society of Hematology (ASH) is to further the understanding, diagnosis, treatment, and prevention of disorders affecting the blood by promoting research, clinical care, education, training, and advocacy in hematology. In addition, ASH provides a wide variety of information and resources for patients with blood disorders, such as links to patient support groups, free access to Hematology (containing current disease-specific information discussed at our annual meeting), and a Find a Hematologist feature to help match patients with practicing hematologists in their area.
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: 1-800-999-6673 or 1-203-744-0100
Email: ORPHAN@rarediseases.org
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: 1-207-655-3800