Resources
Educational & Downloadable Materials
- Diamond Blackfan Anemia (StatPearls)
- Effectiveness and tolerability of twice daily dosing of deferasirox in unresponsive and intolerant transfusion-dependent beta-thalassemia patients: A narrative review (Babu et al. 2020)
- Ferritin trends do not predict changes in total body iron in patients with transfusional iron overload (Puliyel et al. 2013)
- How I Treat Diamond-Blackfan Anemia (by Adrianna Vlachos and Ellen Muir, 2010)
- International Clinical Care Consensus Document
2019:
Dr. Speiser – Endocrine Dysfunction
2017:
Farrar – Understanding The Genetics of DBA
Burroughs – Bone Marrow Transplant DBA
Macari – Fishing for New Therapies for DBA
2015:
Bodine – Where do we go from here?
Ellis – Iron Overload – Adapted from DBA Day Iron Overload by Dr. Lawrence Wolfe
Ellis – Direction of DBA Research and Overview
LaClair – Complementary and Alternative Medicine
Lodish – Enhancing progenitor cell self-renewal; a new approach to stimulating red cell production
Smith – Hematopoietic Stem Cell Transplant
Vlachos – Introduction to DBA and Its Treatment
Vlachos – Life with DBA (including iron overload)
2013:
Managing Your DBA Care: A Notebook for Families
Whether you have Diamond Blackfan anemia (DBA) syndrome or you have a child with DBA syndrome, creating a notebook to manage your care is a good idea. The DBA Syndrome Care Notebook was created by the CDC with the assistance of the Resource Center Nurses and our DBA syndrome families. Click on the “Instructions” document below to get started.
Links & Phone Numbers
Diamond Blackfan Anemia Registry of North America (DBAR)
https://www.dbar.org
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.
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.
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.
Friends of DBA
www.friendsofdba.info
Friends of DBA supports research to find a cure for DBA syndrome. This foundation also provides education and assistance to DBA syndrome families.
DBAF
The DBA Foundation encourages our families to connect with us and learn more about how we can assist you. We welcome your calls and/or emails. Whether you are newly diagnosed or have been dealing with DBA for a long time, please contact us. We’d love to hear from you! Dawn Baumgardner can be reached at 1-716-674-2818 (Eastern time) or by emailing DBAF@dbafoundation.org.
Social Media
www.facebook.com
To become a “Fan” of the Diamond Blackfan Anemia Foundation on Facebook click here.
To join “DBA Family Group” on Facebook click here.
To join "DBAF For Adults with DBA" on Facebook click here.
Twitter
http://twitter.com/DBAFoundation
Do you have twitter? If so, follow us and keep up to date on Diamond Blackfan Anemia tweets.
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.
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
American Red Cross
Provides an overview of the blood transfusion process and discusses the safety measures taken in preparing donated blood.
National Library of Medicine: Medline Plus
http://www.nlm.nih.gov/medlineplus/bloodtransfusionanddonation.html
Provides links to information on blood transfusion and donation, including safety measures around blood transfusions, an overview of the transfusion process, and relevant publications.
National Library of Medicine: Stat Pearls
https://www.ncbi.nlm.nih.gov/books/NBK499824/
This resource gives a detailed description of the blood transfusion process, including equipment used, blood preparation, transfusion technique, and possible complications.
Be the Match
https://bethematch.org/
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, Email: patientinfo@nmdp.org
Bone Marrow & Cancer Foundation
https://bonemarrow.org
Assists transplant patients and their families by providing financial assistance, comprehensive resources, educational information, physician referrals, and emotional support programs.
Phone: 1-800-365-1336 or 212-838-3029
Email: BMCF@BoneMarrow.org
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: 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)
Email: peggyburkhard@nbmtlink.org
American Cancer Society
www.cancer.org
Publications on cancer, treatment options, patient care, and support groups.
Phone: 1-800-227-2345
Medicare
Federal health insurance for some patients with disabilities and patients 65 years of age and older.
Phone: 1-800-MEDICARE (1-800-633-4227)
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: 1-301-496-4000
Social Security
www.ssa.gov/
Provides assistance and benefits to some individuals with disabilities.
Phone: 1-800-772-1213
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.
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.
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: 617-249-7300
GoodRx
https://www.goodrx.com
Offers discounts on certain prescriptions.
Jadenu
https://www.jadenu.com/patient-support/financial-resources/
Universal copay program for Jadenu.
To find out if you are eligible for the Universal Co-pay Program, call 1-877-577-7756 or visit Copay.NovartisOncology.com