Tomorrow is a BIG day for our community 💙 Katie Stevens, Team Telomere’s Executive Director, will take on the 2026 United Airlines NYC Half Marathon on behalf of the EveryLife Foundation for Rare Diseases, in honor of the Rare Disease and Telomere Biology Disorder community!

We are pleased to share that Eva Edelson is stepping into an expanded volunteer role with Team Telomere as our Scientific Social Writer. Eva has already been contributing meaningfully to how we communicate science with our community, and we are grateful to have her continue this work.

Continuing our recaps from advocates on the ground during Rare Disease Week, we are grateful to highlight Kendall Davis, a member of Team Telomere’s Board of Directors, and her takeaways.

We are excited that Laura Mainz, PhD is stepping into an expanded role with Team Telomere as our Scientific Engagement Liaison! As Scientific Engagement Liaison, she will help advance the advocacy and research aims of our mission by supporting scientific, clinical, and community-facing initiatives.

This week, we will be sharing reflections and takeaways from advocates on the ground at Rare Disease Week. Our first reflection comes from Luke Sharon, one of our volunteers, who attended the February 23rd HHS Panel on Innovation in Rare Disease Therapies as a representative of Team Telomere.

This International Women’s Day, we celebrate all of the incredible women who power and are part of our Team Telomere community. This year’s theme, Give To Gain, feels especially meaningful to us. When women give, we all gain – gain community, advocacy, momentum in research, and hope.

📢 Abstract submissions are open for the Team Telomere Scientific Summit 2026! 🗓 Submission deadline: April 7, 2026 at 5:00 PM ET Submit your abstract and join us as we bring together science, advocacy, and lived experience to move the field forward: teamtelomere.org/scientific-s...

Join us for our March Community Chat with host Dr. Doug Simonetto!

Join us for our March Open Forum Community Chat with Dr. Savage, Katie Stevens and Global Ambassador Jacquie Roskell.

Team Telomere has a special tradition on Rare Disease Day: releasing our Impact Report. Each year, it offers a moment to pause, reflect on how far we have come, honor the community that makes this work possible, and look ahead to what is still to come. Read the Impact Report bit.ly/TTImpactRepo...

As part of 26 for 26, today we honor Halley (21). In 2024, she learned a TERT mutation had been quietly passed through her family. Healthy and in college, her diagnosis brought both gratitude and uncertainty.

Rare Disease Week is here - and our community is showing up. 💜

As part of our 26 for 26 campaign, today we honor Ruthie. Diagnosed with dyskeratosis congenita (Revesz syndrome, TINF2), Ruthie underwent a bone marrow transplant in 2021 and is nearing her 5th re-birthday!

As part of our 26 for 26 campaign, today we honor Gerald Wysoczynski Jr. (36). After years of missed signs, Gerald was diagnosed with Dyskeratosis Congenita due to critically short telomeres and later underwent a bone marrow transplant.

We’re proud to share that Team Telomere is now an accredited member of the Better Business Bureau!

Meet our next 26er, Ewan. Ewan was diagnosed with dyskeratosis congenita at just 12 years old. Determined not to let DC define him, Ewan learned how to advocate for himself, juggling medical appointments with school, communicating with teachers, and refusing to fall behind.

This Black History Month, we celebrate the power of community in shaping a better future.

Continuing to honor Rare Disease Month, Team Telomere is moving forward with Research Season, supporting research that advances understanding and care for people living with telomere biology disorders.

Our community is at the heart of everything we do. From diagnosis through lifelong care, Team Telomere provides trusted information, connection, advocacy, and hope for patients, caregivers, clinicians, and researchers.

Today, we honor Chad Carson. Katie will be running the Corvallis ½ in honor of Chad.

Continuing to honor Rare Disease Month, Team Telomere is carrying forward Research Season, supporting research that expands options and advances care for people living with telomere biology disorders.

Join us for our February Community Chat on Saturday February 28th at 7pm ET! This month’s chat is a special chat held for Rare Disease month! Grab your favorite drink, put on your Team Telomere gear and join us for an hour of fun times and great conversations!

Continuing through Rare Disease Month, Team Telomere is carrying forward Research Season, supporting research that expands understanding, improves care, and builds a future with more options for people living with telomere biology disorders.

We are halfway through our 26 for 26 campaign, and to date have raised just under $5000 through your sharing with your own community. Today we honor Josh Friedman. Josh’s dad, Bruce, launched Team Josh and the DCO Riders via the Million Dollar Bike Ride.

Continuing to honor Rare Disease Month, Team Telomere is advancing Research Season, supporting research that brings understanding, options, and hope to families living with telomere biology disorders.

This Valentine’s Day, we celebrate the most powerful kind of love - the kind that saves lives. ❤️ Today is also National Donor Day! In the telomere biology disorder community, patients often depend on bone marrow, lung, and liver donors to survive.

February is Black History Month. We honor Henrietta Lacks, whose HeLa cells transformed modern medicine - while recommitting to ethical, inclusive research rooted in consent and dignity. At Team Telomere, patient partnership, trust, and equity drive better science for all.

Continuing to honor Rare Disease Month, Team Telomere is moving forward with Research Season, supporting research that expands understanding and improves care for people living with telomere biology disorders.

Continuing to honor Rare Disease Month, Team Telomere is carrying forward Research Season, raising funds to support research that improves understanding and expands treatment options for telomere biology disorders.

Team Telomere is carrying forward Research Season, supporting research that improves care, expands options, and builds a better future for people living with telomere biology disorders. As part of our 26 for 26 campaign, we are honoring 26 individuals throughout February.

Today, we honor our 26er, Lorelei (Rori) Robertson. Standing beside Rori every step of the way has been her mom, Jena. When Rori was first diagnosed, Jena recalls feeling completely alone, until finding connection and support through Team Telomere.

Honoring Rare Disease Month, Team Telomere is moving forward with Research Season, raising funds to support research that improves care and outcomes for people living with telomere biology disorders. As part of our 26 for 26 campaign, we are honoring 26 individuals. Today, we honor Gabby Stephens.

As part of our 26 for 26 campaign, we are honoring 26 individuals throughout February, sharing the lived experiences that guide our mission and remind us why this work matters. Join Katie in her miles by donating $26 for 26 miles! Today, we honor our 26er, Harrison.

Today, we honor Damian Carbajal. After serving in the U.S. Air Force, Damian’s health journey led to a diagnosis of short telomere syndrome with dyskeratosis congenita and bone marrow failure. In 2023, he underwent two bone marrow transplants, extensive treatment, and prolonged hospitalizations.

Today’s #26for26for26 honoree is Kyndall Sewing (age 11) 💜 About 30% of TBD patients don’t have an identifiable gene-fueling our push for research. Kyndall, a creative artist and proud sister, received a bone marrow transplant at age 5 and continues to shine with strength and joy.

February is #BlackHistoryMonth. We honor the resilience, courage, and hope of Black individuals past and present - especially within the rare disease community. We also recognize leaders like Dr. Charles Drew, whose groundbreaking work in blood banking continues to save lives.

Calling all centers serving individuals with Telomere Biology Disorders! Team Telomere is expanding our Centers of Excellence network to advance coordinated, high-quality TBD care, research, and advocacy. Applications due April 17, 2026 (5PM ET).

Today’s #26for26for26 honoree is Amanda Curry 💜 Born with a TERC gene mutation, Amanda was diagnosed with dyskeratosis congenita at 29 and underwent two bone marrow transplants in 2021. A wife, mama of two, and Team

February is #RareDiseaseMonth. Rare disease is everyday for our Team Telomere community - so we’re launching Research Season 💜 First up: #26for26for26 as Katie runs TWO half marathons to fund research. Today, we honor the life of Kaitlin Dillion, whose courage reminds us why this work matters.

We’re excited to spotlight new IPF genetics research in The Lancet Respiratory Medicine by Team Telomere & Uplifting Athletes’ 2026 YID pick, Dr. David Zhang. The study shows shortened telomeres increase IPF risk—and that IPF has multiple genetic pathways. 🧬

We are thrilled to announce that registration is now OPEN for the Team Telomere Scientific & Community Summit 2026, taking place July 7 to 10, 2026, in Missoula, Montana!

January is National Blood Donor Month, designated in 1969, and it’s especially close to our hearts at Team Telomere. Many in our community rely on blood transfusions, sometimes regularly, sometimes at critical moments in their care.

Super Bowl Sunday is just two weeks away! If you’re doing Super Bowl squares this year, consider making Team Telomere part of the fun!

We're excited to share groundbreaking news from the International Society for Heart and Lung Transplantation (ISHLT)! Swipe through our graphic to learn what this means and read a summary of the key recommendations. teamtelomere.org/research-cor...

Team Telomere is incredibly grateful to partner with Citizen Health. We believe this platform will help support our community and address questions that matter most to those living with TBDs.

We have been receiving questions about the recently-opened Telomere Biology Disorder clinical trial: Nucleoside Therapy in Patients With Telomere Biology Disorders. Team

Today we honor Dr. Martin Luther King Jr. and his call to action: “The fierce urgency of now… no time for apathy or complacency.”

This week, we teased that something exciting was on the skyline - and today, we are beyond thrilled to share the news. First and foremost, today is our Executive Director, Katie Stevens’ birthday!

We created the Community Experience Survey 2026 to hear from individuals and families receiving TBD care at medical centers, including Team Telomere’s Centers of Excellence. This is your opportunity to shape the future of TBD care. The survey takes just 2 to 5 minutes to complete: bit.ly/49AUtc4.

Something exciting is on the skyline! This year, Team Telomere will be taking the extra mile to honor our community in an exciting new way. 26 for 26 for 26. Stay tuned this weekend!