The Bloom's Syndrome Association was founded in 2012 to relieve the isolation of those affected by Bloom's syndrome; to better inform medical and scientific researchers about the everyday realities of living with or raising a child with Bloom's syndrome; to provide practical information for parents, teachers, and healthcare professionals; and to complement the services of the Bloom's Syndrome Foundation, the Bloom Syndrome Foundation (Europe), the Bloom's Syndrome Registry, and Bloom's Connect: a social-networking, rights-advocacy organization for persons with Bloom's syndrome and their support systems.
The BSA website was conceived as a locus for news, events, issues, answers, and discourse about Bloom's syndrome. Members are invited to share their profiles and contact information in confidence with other members. Resource links include medical and scientific organizations, government agencies, advocacy groups, related organizations, manufacturers and sellers of assistive technologies, and professional contacts. A BSA newsletter is planned. Donations to the BSA may be made online or through the mail.
by stopping and looking
for a moment at these most rare
and seeming unique conditions,
we might yet be surprised at
the ubiquity of what they teach us."
Brian C. Campbell, M.D., Ph.D.,
in summation of
the Bradshawe Lecture on Some Rare and New Diseases,
delivered by James Piaget