A Community for Telomere Biology Disorders
Our Mission & Vision
A Community of Telomere Biology Disorders
Our mission is to provide information and support services to families worldwide affected by Dyskeratosis Congenita and Telomere Biology Disorders, to encourage the medical community’s research in finding causes and effective treatments, and to facilitate improved diagnosis by educating medical providers.
Our vision is to see a world where every person impacted by Telomere Biology Disorders – including the affected individuals, caregivers, researchers, and clinicians – has accessible care, community, and resources, with the goal of positively changing the course of this disease, driving toward improved treatments and ultimately one day a cure.
Million Dollar Bike Ride
We are excited to announce that registration for the 2023 Million Dollar Bike Ride is now open. Come and join us at the University of Pennsylvania campus on June 10, 2023 to help raise funds to support research for rare diseases.
Make A Donation
Your help makes it possible to meet patients’ needs, hold impactful conferences, develop fresh education programs and fund research for the cures, along with improved treatments until cures are discovered.