Research Corner

From the CNBC Cures Summit: Why Rare Disease Progress Starts with Community By Kendall Davis A few weeks ago had the privilege of attending the CNBC Cures Summit, not only as someone who has spent the majority of my career in rare disease drug development and patient...

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 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...

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?...

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...

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...

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...

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...

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...