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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. |
