Links

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)

www.dmaf.org
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.

DBA Canada

www.dbacanada.com
DBA Canada’s mission is to provide education, support and resources, as well as to help fund research of DBA. This foundation was started out of a need for Canadian individuals and families affected by DBA to have a resource which they can turn to for help. DBA Canada receives its support solely through donations and family fundraisers and is a registered charity with the Canada Revenue Agency.

DBA UK

diamondblackfan.org.uk
DBA UK is a registered charity run by elected volunteers and governed by a written constitution. They aim to deliver support, research and hope to the DBA community by bringing families together to share their experiences, communicate the latest medical information and raise funds to support those with DBA in the UK.

Web-based Support Groups

Blackfan Anemia, email 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

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/

CaringBridge

www.caringbridge.org
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.

Facebook

www.facebook.com
To become a “Fan” of the Diamond Blackfan Anemia Foundation on Facebook click here.

Twitter

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

www.medlineplus.gov
Information and resources.

Bone Marrow/Stem Cell Transplant

BMT InfoNet

www.bmtinfonet.org
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

www.nbmtlink.org
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)

www.marrow.org/index.html
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

www.cancer.org
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.html
Spanish version http://www.cdc.gov/ncbddd/Spanish/dba/index.html
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)

www.nhlbi.nih.gov/
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:

www.cc.nih.gov
Phone: 1-301-496-3841
E-mail: mussel@mail.nih.gov

Social Security

www.ssa.gov/

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.medicaid.gov/index.html
Medicaid health insurance provides health care coverage for some people who cannot afford it.

Hematology

American Society of Hematology (ASH)

www.hematology.org/patients
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

www.rarediseases.info.nih.gov
Office of Rare Diseases Information about rare diseases, including links to support groups.

National Organization for Rare Disorders (NORD)

www.raredisease.org
Information and patient networking. Phone: 1-800-999-6673 or 1-203-744-0100
Email: ORPHAN@rarediseases.org

Support Services

Camp Sunshine

www.campsunshine.org
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