The BCM Registry is an online patient registry established and maintained by the BCM Families Foundation (BCMFF). The BCMFF is the only patient-led organization worldwide with a mission to eradicate BCM. Established in 2014 in the United States, the Foundation has gathered a community of above 300 people (130 families) from around the globe.
BCM affects 1 out 100.000 people – mainly males - who experience loss of visual acuity, photophobia, myopia, nystagmus, impaired color vision from birth and, therefore, a severely reduced quality of life. To help those lives, the foundation makes available provides research funds and infrastructures that are instrumental to discover new treatments and/or to improve current ones. Through the collection and analyses of as many patients’ personal and clinical data as possible, the BCM Registry is a milestone along the path that will lead to clinical trials of innovative therapies.
The BCM Registry is owned by the BCMFF and governed by a Steering Committee that involves renowned clinicians and researchers in the field as well as patient representatives.
To learn more about BCM, the activities and current projects of the BCMFF or how to get involved, visit http://www.blueconemonochromacy.org.