Links
National Institutes of Health <www.nih.gov>
Centers of Disease Control <www.cdc.gov>
DBAR <www.dbar.org> 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.
DBA Foundation <www.dbafoundation.org> 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.”
PubMed <www.ncbi.nlm.nih.gov/pubmed>, 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.
Inherited Bone Marrow Failure Syndromes Study <www.marrowfailure.cancer.gov>
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.
NHGRI Glossary <www.genome.gov>
Its mission is to address the impact of life-threatening or chronic illness on every member of the family.
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: blackfansubscribe@yahoogroups.com, or go to the website.
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.
Alexandra Reinhardt <www.alexandrareinhardt.co.uk>
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.
American Society of Hematology <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.
Niños de Hierro A. C. <www.ninosdehierro.org>
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.