Research Corner
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.
Research Highlights
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:
Rare Disease Day at the NIH: Why Advocacy Matters in the Future of Innovation
Rare Disease Day at the NIH: Why Advocacy Matters in the Future of Innovation By Kendall Davis Rare Disease Day at the NIH is always a powerful reminder of how far the rare disease field has come, and how much work still lies ahead. Hosted by the NIH’s National Center...
Reflection on 2/23 HHS Panel on Innovation on Rare Disease Therapies
Reflection on 2/23 HHS Panel on Innovation on Rare Disease Therapies By Luke Sharon In a political era where public funding is more often questioned than defended, funding for research on rare diseases, advancements, and clinical trials has unfortunately been...
TRACTS Roundtable: Summary and Highlights from January 2026 Roundtable
Development of Novel Therapies for Patients with Telomere Biology Disorders This roundtable sought to set concrete, achievable milestones in the development of novel therapies and curative options for patients with TBDs. What does a "cure" look like for patients?...
New Study on the Genetics of Idiopathic Pulmonary Fibrosis
We are thrilled to highlight a study on the genetics of idiopathic pulmonary fibrosis (IPF), recently published in The Lancet Respiratory Medicine by Team Telomere and Uplifting Athletes' very own 2026 Young Investigator Draft Pick, Dr. Da (David) Zhang! The full...
ISHLT Consensus Statement: Telomere Disorders and Lung Transplantation
We're excited to share groundbreaking news from the International Society for Heart and Lung Transplantation (ISHLT)! For the first time ever, medical providers now have official guidelines for diagnosing and treating short telomere syndrome (STS), better known as...
Team Telomere at ASH 2025: Research Summaries and more!
Advancing Awareness, Research, and Diagnosis in Telomere Biology Disorders Team Telomere attended the 2025 American Society of Hematology (ASH) Annual Meeting, where we represented the Telomere Biology Disorder (TBD) community on the global stage. ASH brings together...
Team Telomere at the Pulmonary Fibrosis Foundation Summit
Advocating for our Pulmonary Fibrosis Community Team Telomere attended the Pulmonary Fibrosis Foundation Summit, where leaders in pulmonary medicine, genetics, and patient advocacy gathered to discuss the care for people living with interstitial lung disease and...
TRACTS Roundtables: Summary and Highlights from our November 2025 Roundtable
Enhancing Diagnostic Testing for People with Telomere Biology Disorders This roundtable, hosted by Team Telomere, examined strategies to improve the identification and diagnosis of individuals with Telomere Biology Disorders. Discussion focused on: (1) optimal...
TRACTS Roundtables: Summary and Highlights from our Inaugural Roundtable!
In November 2024, Team Telomere hosted our inaugural Telomere Research Accelerating Collaborative Translational Science (TRACTS) Roundtable. TRACTS Roundtables are dynamic, quarterly gatherings where researchers and clinicians in the TBD field can collaborate to...
Additional Resources
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.
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 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!