|  
The
mission of the Diamond Blackfan Anemia Foundation, Inc. (DBAF) is
"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."
:
The DBAF was founded in 1994 by parents
of children with Diamond Blackfan Anemia (DBA). The DBAF is a New
York not-for-profit foundation registered with the Charities Bureau
of New York State Department of Law, 120 Broadway, New York, New
York 10271.
The DBAF supports itself solely through
donations and is staffed exclusively by volunteers. The DBAF also
funds medical research projects approved by its scientific advisory
board. It organizes family meetings, publishes a semi-annual newsletter,
and provides literature for those directly affected by DBA.
Diamond
Blackfan anemia (DBA) is a rare red blood cell anemia usually diagnosed
within the first two years of life. DBA patients are treated with
steroids, usually prednisilone, and/or placed on a chronic red cell
transfusion program. Bone marrow transplantation is only an option
in very serious cases and when the patient has an HLA identical
sibling match.
|
