National Institutes of Health (NIH), is a part of the U.S. Department of Health and Human Services, is the nation’s medical research agency—making important medical discoveries that improve health and save lives.
National Heart, Lung, and Blood Institute(NHLBI) provides global leadership for a research, training, and education program to promote the prevention and treatment of heart, lung, and blood diseases and enhance the health of all individuals so that they can live longer and more fulfilling lives. The NHLBI stimulates basic discoveries about the causes of disease, enables the translation of basic discoveries into clinical practice, fosters training and mentoring of emerging scientists and physicians, and communicates research advances to the public. It creates and supports a robust, collaborative research infrastructure in partnership with private and public organizations, including academic institutions, industry, and other government agencies. The Institute collaborates with patients, families, health care professionals, scientists, professional societies, patient advocacy groups, community organizations, and the media to promote the application of research results and leverage resources to address public health needs. The NHLBI also collaborates with international organizations to help reduce the burden of heart, lung, and blood diseases worldwide.
National Institutes of Health Office of Rare Diseases The ORDR Web site aims to answer questions about rare diseases and the activities of the ORDR for patients, their families, healthcare providers, researchers, educators, students, and anyone with concern for and interest in rare diseases. The site provides information about ORDR-sponsored biomedical research, scientific conferences, and rare and genetic diseases. It also serves as a portal to information on major topics of interest to the rare diseases community.
National Human Genome Research Institute began as the National Center for Human Genome Research (NCHGR), which was established in 1989 to carry out the role of the National Institutes of Health (NIH) in the International Human Genome Project (HGP). The HGP was developed in collaboration with the United States Department of Energy and begun in 1990 to map the human genome. In 1993, NCHGR expanded its role on the NIH campus by establishing the Division of Intramural Research to apply genome technologies to the study of specific diseases. In 1996, the Center for Inherited Disease Research (CIDR) was also established (co-funded by eight NIH institutes and centers) to study the genetic components of complex disorders.
National Cancer Institute (NCI) is part of the National Institutes of Health (NIH), which is one of 11 agencies that compose the Department of Health and Human Services (HHS). The NCI, established under the National Cancer Institute Act of 1937, is the Federal Government’s principal agency for cancer research and training.
National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) conducts and supports research on a number of hematologic diseases, including certain types of anemias and iron disorders. NIDDK fact sheets covering some of these diseases and conditions can be found below, with new material to be added in the near future. TheNational Heart, Lung, and Blood Institute (NHLBI) of the National Institutes of Health provides additional information on blood diseases and conditions.
The Telemedicine & Advanced Technology Research Center (TATRC) performs medical reconnaissance and special operations to address critical gaps that are underrepresented in DoD medical research programs. TATRC is an office of the headquarters of the US Army Medical Research and Materiel Command (USAMRMC). TATRC fosters research on health informatics, telemedicine/m-Health, medical training systems, and computational biology, and promotes and manages science and engineering in other key portfolios. Through an extensive network of partners, TATRC is focused at both ends of the research spectrum, exploring models of high risk and innovative research, and putting research findings into the hands of warfighters while looking toward wider civilian utility. TATRC augments core medical research programs through special funding and partnership opportunities.
Centers of Disease Control CDC.gov is CDC’s primary online communication channel. Annually, there are close to 500 million page views to the site, averaging 41 million page views per month. CDC.gov provides users with credible, reliable health information
American Society of Hematology 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.
Diamond Blackfan Anemia Registry of North America (DBAR) Established in 1993 to improve the understanding of DBA patients and their families. The DBAR collects clinical data on DBA patients and their families and offers participation in research protocols.
Inherited Bone Marrow Failure Syndromes Study Etiologic Investigation of Cancer Susceptibility in Inherited Bone Marrow Failure Syndromes (IBMFS). This is a National Cancer Institute study of the epidemiology and natural history of the Inherited Bone Marrow Failure Syndromes, including Diamond-Blackfan Anemia, in patients and their families. It focuses on potential complications such as leukemia or solid tumors, using questionnaires, thorough physical exams, laboratory studies (including mutation testing), and age-appropriate cancer screening.
Daniella Maria Arturi Foundation The mission of the Daniella Maria Arturi Foundation (DMAF) is to stimulate and support advanced clinical and laboratory research and clinical care initiatives in Diamond Blackfan Anemia (DBA), while increasing DBA awareness among the scientific, medical, lay and government communities. DBA is the first disease known to be associated with a defect in ribosome biosynthesis and is characterized by red cell aplasia, birth defects and a potential increased predisposition to cancer. The coordination of these efforts aims to enhance the understanding of DBA in order to make improvements in diagnosis, treatment, and direct patient care, while working toward a cure for DBA patients around the globe
Diamond Blackfan Anemia Foundation, Inc. (DBAF) founded in 1994, has adopted the following mission statement: “to collectively and actively generate funds for the charitable and scientific purpose of furthering, by clinical study, laboratory research, publication and teaching, the knowledge of the disorder known as Diamond Blackfan Anemia (DBA). Our intentions are to share this knowledge, to inform, to lend support, and to communicate with all families of DBA patients.”
Captain Courageous is a charity raising funds to assist with research into the cause, and hopefully potential cure, for children suffering from Bone Marrow Failure Diseases.
Jacks Fight For a Cure is a Canadian family’s private mission to raise funds through friends and family members to assist DBA established Foundations in funding DBA specific research and DBA Medical Meetings.
Alexandra Reinhardt The extraordinary story of Alexandra Reinhardt who suffered from birth with DBA and was also severely deaf but was still able to lead a normal life and fulfill herself through her art.
Niños de Hierro A. C. PAGINA WEB DE NIÑOS DE HIERRO DBA Related Website in Mexico TO TAKE CARE OF INTEGRAL WAYS PATIENTS WITH ANEMIA AND/OR IRON OVERLOAD – TO IMPROVE QUALITY OF LIFE.
Web-based Support Groups
Diamond 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: email@example.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: firstname.lastname@example.org 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.
Pub Med a service of the National Library of Medicine, includes over 15 million citations for biomedical articles back to the 1950’s. These citations are from MEDLINE and additional life science journals. PubMed includes links to many sites providing full text articles and other related resources.
BLOOD, Journal of the American Society of Hematology. Leading the world in reporting basic and applied hematology research.
Wiley Online Library hosts the world’s broadest and deepest multidisciplinary collection of online resources covering life, health and physical sciences, social science, and the humanities. It delivers seamless integrated access to over 4 million articles from 1500 journals, almost 10,000 online books, and hundreds of reference works, laboratory protocols and databases.
British Journal of Haematology publishes original research papers in clinical, laboratory and experimental haematology. The Journal also features annotations, reviews, short reports, images in haematology, Letters to the Editor and book reviews.
Seminars in Hematology is a topical journal that focuses on subjects of current importance in clinical hematology and related fields. The journal is devoted to making the present status of such topics and the results of new investigations readily available to the practicing physician. Seminars in Hematology is of special interest to hematologists, oncologists, internal medicine specialists, blood bankers and specialists in thrombosis and hemostasis.
Nature is a weekly international journal publishing the finest peer-reviewed research in all fields of science and technology on the basis of its originality, importance, interdisciplinary interest, timeliness, accessibility, elegance and surprising conclusions. Nature also provides rapid, authoritative, insightful and arresting news and interpretation of topical and coming trends affecting science, scientists and the wider public.
The American Journal of Human Genetics publishes papers online ahead of the print issue on a weekly basis.