The Bloom’s Syndrome Association is an international family support and patient advocacy organization for persons affected by Bloom's syndrome—a rare genetic disorder with major medical complications, of which cancer is the most prominent. The Association comprises persons known to have a diagnosis of Bloom's syndrome, their families and friends, medical and scientific researchers, healthcare professionals, educators, and other supporters.
The mission of the Association is to foster interactions among its members, so that they might learn from and support one another; to raise funds for research to advance treatments and a cure for Bloom’s syndrome; and to raise public awareness about the syndrome and its importance to worldwide cancer research.
The Bloom’s Syndrome Association (BSA) is a chartered, nonprofit, tax-exempt organization supported by member contributions, corporate grants and sponsorships, and outright gifts. Donations are 100% tax-deductible. The Association's Employer Identification Number (EIN) is: 80-0813615.
Some of the faces of Bloom's syndrome…
is a misconception that rare disease research only helps a small number
of patients. Finding a treatment for a rare condition often informs
treatment for a more common disease."
Jakub Tolar, M.D., PhD.,Director, Stem Cell Institute, University of Minnesota
From CNN Health: A child's struggle inspires drive for cure