Dyskeratosis Congenita Outreach, Inc. has partnered with Genetic Alliance and eight other disease advocacy organizations in a project called Community Engaged Network For All (CENA) to create the Dyskeratosis Congenita and Telomere Biology Disorder Patient Registry.
We are collecting health data in the form of a highly secure survey, which will allow medical researchers to obtain the data they need to conduct important research on Dyskeratosis Congenita. Our Patient Registry is focused on symptoms related to Dyskeratosis Congenita and Telomere Biology Disorders.
Aggregating information from individuals with Dyskeratosis Congenita and Telomere Biology Disorders about their health and their lifestyle will help advance overall well being for all. It is important that we gather lived experience, clinical records, device data, and health information from as many individuals as possible.