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 supports itself solely through donations and our families’ fundraisers. 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 DBA families throughout the United States, Canada, and worldwide. The DBAF publishes a semi-annual newsletter containing personal DBA stories, DBA clinical trial information, current research, and DBA activities.

https://dbafoundation.org/

 

The Daniella Maria Arturi Foundation (DMAF)

was founded by Marie and Manny Arturi in early 1996 shortly after the loss of their daughter, Daniella, who was afflicted with a rare bone marrow failure disorder called Diamond Blackfan Anemia. The mission of the 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. Click here to learn more about their foundation.

http://www.diamondblackfananemia.org/

 

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.

https://dbafoundation.org/families/national-cancer-institute/