Diagnosis & Management Guidelines

Telomere Biology Disorders: Diagnosis and Management Guidelines, Second Edition, is a comprehensive reference manual for patients, physicians, and researchers.

Telomere Biology Disorders: Diagnosis and Management Guidelines, Second Edition, is a comprehensive reference manual for patients, physicians, and researchers. These updated guidelines result from a multi-disciplinary international collaboration between clinicians and scientists united by the goal of improving the lives of people with Telomere Biology Disorders, including Dyskeratosis Congenita. They reflect an evolving understanding of these diseases. The guidelines cover the major body and organ systems and the underlying biology of TBDs, as well as routine care, ongoing investigations, and a look ahead to possible future treatment options. The clinical management recommendations are based on the expert opinions of the chapter authors, reviewers, and editors.

Patients & Families: Application for Physical Copy of Guidelines

Dear Patients and Families, We are honored to present the Second Edition of Telomere Biology Disorders: Diagnosis and Management Guidelines. Our commitment is steadfastly to our community, and our mission remains resolute in providing information and support to individuals and families impacted by Telomere Biology Disorders, as well as clinicians working with people with TBDs.

These guidelines are a comprehensive reference manual resulting from a multi-disciplinary international collaboration between clinicians and scientists united by the goal of improving the lives of people with Telomere Biology Disorders, including Dyskeratosis Congenita.

The guidelines cover the major body and organ systems and the underlying genetics of TBDs, as well as routine care, clinical trials, and a look ahead to possible future treatment options. The clinical management recommendations are based on expert opinions of the chapter authors, reviewers, and editors. You are invited to share the guidelines with your clinical care team.

Below is our application form for a physical copy of the guidelines. Each family will be mailed one free physical copy of these guidelines upon filling out this short application form. If you are new to our community or have not received a care package yet, please fill out our care package application instead of this application as the care package comes with an updated copy of our guidelines here.

Additional copies can be purchased from Amazon.

Clinicians & Researchers: Application for Physical Copy of Guidelines

Dear medical and scientific community,

We are honored to present to you the Second Edition of Telomere Biology Disorders: Diagnosis and Management Guidelines. Our commitment is steadfastly our community, and our mission remains resolute in encouraging the medical community’s research providing quality education.

These guidelines are a comprehensive reference manual resulting from a multi-disciplinary international collaboration between clinicians and scientists united by the goal of improving the lives of people with Telomere Biology Disorders, including Dyskeratosis Congenita.

The guidelines cover the major body and organ systems and the underlying genetics of TBDs, as well as routine care, clinical trials, and a look ahead to possible future treatment options. The clinical management recommendations are based on the expert opinions of the chapter authors, reviewers, and editors.

Below is our application form for a physical copy of the guidelines. Each individual from the medical/scientific community requesting a copy of these guidelines will be given one free physical copy upon filling this short application form. (Please note: If you select that you are bulk ordering for a medical/scientific institution, you will be contacted directly to determine and complete the necessary next steps.)

Telomere Biology Disorders: Diagnosis and Management Guidelines Download

Sponsors: 

Team Telomere is beyond grateful for our generous sponsors that make it possible for us to effectively distribute our guidelines to our patient families, medical/scientific network, and partner institutions. Their support makes significant strides for those in our community.

If you are interested in sponsoring the Telomere Biology Disorders: Diagnosis and Management Guidelines, Second Edition, email info@teamtelomere.org.