Role of Diamond Blackfan Anemia Canada in the funding ecosystem
Diamond Blackfan Anemia Canada (DBA Canada) is a national charitable organization founded in 2010 by parents of children diagnosed with Diamond Blackfan anemia, a rare bone marrow failure syndrome. As a registered charity with the Canada Revenue Agency, DBA Canada mobilizes donations from families, friends, corporations, and community events to finance medical research and improve the quality of life of people living with DBA in Canada.
The organization directs a significant share of its resources to research projects led by clinicians and scientists in Canada and abroad. The Research section highlights recent support for work on preclinical lentiviral gene therapy, gene discovery, the use of branched-chain amino acids as a treatment strategy, targeted corticosteroid therapy, and studies dissecting the genetic architecture of Diamond Blackfan anemia using whole-exome sequencing. By co-funding these investigator-led projects, DBA Canada helps accelerate the development of new therapies and deepen understanding of the disease.
Supported audiences and overall impact
Beyond laboratory and clinical research, DBA Canada also funds initiatives that directly benefit patients and families. The organization has supported international consensus conferences on DBA, sponsored exhibits at major hematology meetings such as the American Society of Hematology (ASH) conference, and contributed to programs like Camp Sunshine. In some cases it helps cover travel and participation costs so that affected children and their caregivers can attend educational and support events.
Fundraising activities such as the annual DBA Diamond Dash, online 50/50 draws, and past gala events have collectively raised hundreds of thousands of dollars. These funds are then allocated to research grants, conference sponsorships, and patient- and family-focused initiatives, reinforcing DBA Canada’s dual mandate of advancing science and providing community support.
Governance and mission
DBA Canada is governed by a volunteer board of directors made up largely of parents of individuals with DBA, and advised by a medical expert in pediatric hematology. This close connection to the patient community ensures that funding priorities remain aligned with urgent clinical needs, including better treatments and, ultimately, a cure.