Team Telomere wants to make sure you are an educated and empowered advocate, this means having access to the most up-to-date information.

Learn more about a study to identify the unmet needs of individuals and families living with dyskeratosis congenita (DC) and related telomere biology disorders (TBDs) 

Elixirgen therapeutics: Phase I/II Study to Evaluate the Safety and Tolerability of EXG34217 in Patients with Telomere Biology Disorders with Bone Marrow Failure

Research & Clinical Trials

To find current research and clinical trials refer to Chapter 30 of our Diagnosis and Management Guidelines: “Finding Clinical Trials” .

Telomere Biology Disorders: Diagnosis and Management Guidelines

The most up-to-date Telomere Biology Disorders research can also be found within our Telomere Biology Disorders: Diagnosis and Management Guidelines.

Telomere Biology Disorders Patient Registry

Those impacted by Telomere Biology Disorders play the most critical role in accelerating medical and scientific advancements. Join our Patient Registry to move our field forward! 


Team Telomere is beyond grateful for all the physicians, health professionals, and researchers who are part of our community and for their important work. We are more committed than ever to fostering a greater connection between our families and researchers to help advance research and diagnostics and treatments until we find a cure for telomere biology disorders. Every other week in 2022, we are planning to have “#TakeoverThursday,” where we want to give our medical and scientific community a space to communicate their work, research updates, and facts about TBDs.