Our Mission
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.
Newly Diagnosed?
Check out our information video to help explain Telomere Biology Disorders and how they impact your body. For additional help please check out our Resources.
Research
Team Telomere wants to make sure you are an educated and empowered advocate, this means having access to the most up-to-date information. To find current research and clinical trials you can visit the US National Library of Medicine’s website. You can also see what the Team Telomere grant has funded by visiting our Physician Resource page.
Clinical Guidelines
The clinical care guidelines for Telomere Biology Disorder-associated medical complications provide background and general clinical guidance as we await comprehensive clinical trials on the management of the multiple complications in TBD/DC.
Family Stories
Our Families Stories blog is being updated. If you have a story or experience you would like to share with others, or if you have an update for your story, please contact us.
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.