Visual Mapping of Rare and Difficult to Diagnose Disorders to facilitate timely and effective discovery and treatment.


GeneticaLens
Louise Tiranoff Productions, Inc.
Brooklyn, New York

Extensive video documentation of individuals with rare disorders is at the heart of GeneticaLens. GeneticaLens produces and integrates video documentaries, clips and textual information to create visual "maps" of the clinical symptoms and behaviors of individuals with rare disorders, providing detailed and complex information in an easy-to-use format, facilitating the diagnosis and treatment of these disorders. Driven by the newest communication technologies such as digital video, web-based data collection, and internet technologies, GeneticaLens' system of data gathering and information management shortens the time frame between breakthrough discoveries in rare disorders and dissemination of the results to those in need of the research including front line practitioners, patients and families.

The Angelman Project is the first in the GeneticaLens Series, to be offered online, on DVD and other media. Since 1993, LTP has gathered approximately 350 hours of video on Angelman syndrome for The Angelman Project. This includes footage of more than 70 individual subjects with AS and their families, as well as documentary video of experts in the diagnosis, therapy and education these subjects. With grants from NIH and The Angelman Syndrome Foundation, LTP completed over 300 video projects, including 59 documentaries (over 60 minutes) as well as hundreds of individual observational clips.