At Team Telomere, we know the power of empowering and educating our community. We are fully dedicated to providing you with access to the most current and up-to-date information available. Delve into the latest research highlights, available study opportunities, and research resources.
Each month, we highlight emerging research in our newsletter to keep our community informed and inspired by the advancements being made for those with Telomere Biology Disorders. Read more about some of our recent highlights:
Disease Progression and Clinical Outcomes in Telomere Biology Disorders
by Dr. Marena Niewisch and Dr. Sharon Savage
Individuals with telomere biology disorders (TBDs) like dyskeratosis congenita (DC) are confronted with numerous health issues during their lifetime. TBDs do not always look the same – some people may have symptoms very early in life while others develop their first...
First Cell Infusion Given in Phase I/II Study of EXG34217 in Patients with Telomere Biology Disorders with Bone Marrow Failure
by Dr. Kasiani Myers
I am very excited to report that in the month of February we successfully gave our first adult with a telomere biology disorder EXG34217, which is an infusion of their own bone marrow stem cells that have had telomere lengthening study therapy at Cincinnati Children’s...
Needs Assessment for Telomere Biology Disorder Community: 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).
Natural History Study for Inherited Bone Marrow Failure Syndromes: Learn more about this prospective cohort that studies Telomere Biology Disorders to understand cancer rates and types, outcomes, and clinical manifestation of these disorders.
Learn more link
Elixirgen therapeutics: Phase I/II Study to Evaluate the Safety and Tolerability of EXG34217 in Patients with Telomere Biology Disorders with Bone Marrow Failure
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!