Diamond Blackfan Anemia
Who to Contact
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The 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."
The DBAF is a 501(c)(3) not-for-profit corporation 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 funds medical research projects which directly or
indirectly benefit DBA patients and which are approved by the DBAF's
medical/scientific advisory board comprised of medical doctors and scientists.
The DBAF organizes meetings which bring together DBA patients, families, and
world-renowned physicians. The DBAF provides informational literature to
patients, DBA family members, health care professionals and other interested
parties. The DBAF networks approximately 300 - 400 DBA families throughout the
United States and Canada. The DBAF publishes a semi-annual newsletter containing
personal DBA stories, DBA clinical trial information, current research, and DBAF
activities.
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Where to Go to Chat with Others
- Blackfan
A discussion group for Diamond Blackfan Anemia patients and families.
Learn More About It
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