BCM Patient Registry Steering Committee
The Steering Committee of the BCM Patient Registry is composed by the BCM Families Foundation Directors and the BCM Families Foundation Scientific Advisory Board.
To contact the BCM Steering Committe send an email to:
Email: Steering.Committee@BCMFamilies.org
BCM Patient Registry
The BCM Registry is an online patient registry dedicated to Blue Cone Monochromacy (BCM), and established in 2019 by the BCM Families Foundation (BCMFF). The BCMFF is a patient-led organization worldwide with a mission to cure BCM. Established in 2014 in the United States, the Foundation has gathered a community of more than 1,000 people (250 families) from around the globe.
BCM affects 1 in 100,000 people, primarily males, who experience loss of visual acuity, photophobia, myopia, nystagmus, impaired color vision from birth and, therefore, a significant challenge to quality of life. BCMFF provides research funds and infrastructures that aid discovery of new treatments and improvement of current ones.
By collecting and analyzing many patients’ personal and clinical data, the BCM Registry is a milestone along the path toward clinical trials of innovative therapies.
The BCM Registry is available at www.BCMRegistry.org, and it is owned and financially managed by the BCMFF through the Board of Directors. The Registry is governed by a Steering Committee that includes renowned clinicians and researchers, as patient representatives.
Information and contacts
Web: www.BCMRegistry.org
Registry Manager – Help Desk
Email: Registry.Manager@BCMFamilies.org
