Team Telomere made Community Chats to be safe spaces for those in the Telomere Biology Disorder community to connect with others, ask questions to experts in the fields, and learn more about TBDs. Each chat has an overarching theme, and individuals can register in advance to attend chats.
Telomere Biology Disorders & Your Family – Kayla Hamilton, MS, CGC
June 2, 2026 – 7PM ET
Telomere Biology Disorders (TBDs) have implications beyond the individual, raising important questions for family members related to genetics and familial testing. Understanding inherited risk and navigating family conversations can be challenging. This Community Chat will be led by Kayla Hamilton, a genetic counselor with expertise in Telomere Biology Disorders. She will discuss how genetic counseling can help individuals and families understand testing options, interpret results, and explore the implications of genetic information. This session offers an opportunity to ask questions and better understand how TBDs may affect families.
IEP Planning – Maggie Rowe
June 9, 2026 – 7PM ET
The educational environment may present unique considerations for children with TBDs. Education advocates know educational laws and policies, such as 504 plans and individual education programs (IEPs), and can be critical resources for navigating educational participation, physical limitations, treatments, and other factors that can impact education. Maggie Rowe is Team Telomere’s amazing Education Liaison. Maggie is a Clinical Social Worker and Child Life Specialist in Spokane, WA, and she has served as a hospital-school liaison, giving her expertise in approaching education for those with chronic medical concerns. Join this community chat to learn more from Maggie and receive practical guidance in a supportive setting.
Adult Open Forum, Living with TBDs
September 1, 2026 – 7:00 PM ET
This Adult Open Forum Community Chat is a space for adults living with Telomere Biology Disorders to come together for open conversation and mutual support. This session will be guided by the questions, experiences, and priorities of those attending. All adults impacted by TBDs are welcome.
Pulmonary Complications in Telomere Biology Disorders – Dr. Mary Beth Scholand
September 15, 2026 – 7PM ET
Pulmonary fibrosis and other lung complications can impact individuals with Telomere Biology Disorders. This Community Chat will be led by Dr. Mary Beth Scholand, MD, an expert in interstitial lung disease and pulmonary fibrosis as well as the founder of University of Utah’s Interstitial Lung Disease Center. Dr. Scholand will discuss pulmonary manifestations associated with TBDs, including clinical presentation, diagnostic approaches, treatment strategies, and lung transplantation considerations. Participants are encouraged to bring questions and engage in discussion in this supportive, educational space.
Vaccines & Telomere Biology Disorders – Dr. Suneet Agarwal & Katie Stevens
October 27, 2026 – 7:00 PM ET
Dr. Suneet Agarwal and Katie Stevens will lead this Community Chat, offering expert insight alongside advocacy perspectives. This session will provide evidence-based information while creating space for questions.
Newly Diagnosed – Dr. Kasiani Myers
December 8, 2026 – 7PM ET
Receiving a diagnosis of a Telomere Biology Disorder (TBD) can feel overwhelming, isolating, and filled with uncertainty. This Community Chat will be led by Dr. Myers, Director of the Hematopoietic Stem Cell Transplant Late Effects and Survivorship Program at the University of Cincinnati and Cincinnati Children’s Hospital Medical Center. Dr. Myers will help guide discussion around early questions following diagnosis, anticipated medical considerations, and how to access appropriate care and resources. This session is designed to create a safe, welcoming space where individuals and families who are newly diagnosed can ask questions and connect with others on a similar journey.
Past Chats
The Skeletal System & Telomere Biology Disorders – Dr. Jane Koo
January 6, 2026 – 7PM ET
Join us for our January Community Chat to meet with Dr. Jane Koo on the Skeletal System & Telomere Biology Disorders, have your questions answered, and engage with other community members.
Community Chat: Open Forum Rare Disease Day Happy Hour
February 28, 2026 – 7PM ET
Join us for a special Open Forum Community Chat in honor of Rare Disease Day, hosted by community member Jena Robertson. This informal, peer-to-peer gathering is a space for anyone in the Telomere Biology Disorder (TBD) community to come together, connect, and unwind. Grab your favorite drink, and spend time with others who truly get it.
UK Community Chat – Jacquie Roskell & Dr. Sharon Savage
March 9, 2026 – 2:00 PM ET / 7:00 PM UK
This Community Chat is designed especially for individuals and families in the UK impacted by Telomere Biology Disorders (TBDs). Jacquie Roskell and Dr. Sharon Savage will help guide an informal, supportive discussion focused on shared questions, lived experiences, and connection across the UK TBD community. Whether you are newly diagnosed, navigating long-term care, or supporting a loved one, all are welcome.
Liver Complications in Telomere Biology Disorders – Dr. Doug Simonetto
March 10, 2026 – 7:00 PM ET
Liver involvement in Telomere Biology Disorders is increasingly recognized and can present in many different ways, from abnormal liver tests to portal hypertension, cirrhosis, and transplant considerations. Dr. Doug Simonetto will lead this Community Chat, providing insight into liver manifestations associated with TBDs, surveillance strategies, and management considerations. This session will also offer ample time for questions in a supportive space.
Telomere Biology Disorder Genetics & Subtypes – Dr. Alison Bertuch
April 28, 2026 – 7:00 PM ET
Telomere Biology Disorders (TBDs) arise from changes in genes involved in telomere maintenance, and ongoing research continues to expand our understanding of these genetic contributors. Navigating genetic information can be complex, but it plays a critical role in diagnosis and clinical management. This Community Chat will be led by Dr. Alison Bertuch, who will provide an overview of TBD-associated genes and explain how these conditions exist along a clinical spectrum. The discussion will include subtypes such as Hoyeraal Hreidarsson syndrome (HH), Revesz syndrome (RS), and Coats plus, highlighting how genetic variation contributes to different clinical presentations. This session offers space to ask questions and deepen understanding.
Bone Marrow Transplants & Therapies – Dr. Timothy Olson
May 19, 2026 – 7:00 PM ET
Approaching conversations around bone marrow transplants and therapies can be overwhelming and complex. This Community Chat offers a supportive space to learn more about transplant considerations, emerging therapies, and what these options may mean for individuals living with Telomere Biology Disorders. This Community Chat will be led by Dr. Timothy Olson, who will discuss transplant indications, therapeutic approaches, and evolving treatment strategies, while providing space for questions in a supportive setting.