The river runs deeper with Penn Medicine in it. 🎣 Team Telomere is proud to welcome them as a Summit River Guide Sponsor, their dedicated TBD Program brings expert, coordinated care to our community. Register now: teamtelomere.org/sci... #TeamTelomere #RareDisease #Summit2026

Nǐ hǎo! Team Telomere is proud to welcome Dr. Chi-Kang Tseng as our Taiwan Global Ambassador. An RNA biologist and TBD researcher at National Taiwan University, he's expanding our reach and science. Welcome to the family, Dr. Tseng! #TeamTelomere #RareDisease #GlobalAmbassador

Mother's Day carries weight for many in our community. Whether you're celebrating, grieving, or just getting through the day, we see you. 💙 Community doesn't take the day off. 👉 teamtelomere.org/sta... #TeamTelomere #TBD #MothersDay

Progress in rare disease research takes a community. 🎣🩵 Grateful to Summit River Guide Sponsor @RepeatDx — the only fully accredited telomere length testing lab in all 50 states. Join us at the 2026 Summit: teamtelomere.org/sci... #TeamTelomere #RareDisease #Summit2026

From staff to Project Lead: 5+ years, 3,000+ hours & Excellence in Community Award winner. Tomorrow, Hannah Raj becomes Dr. Raj—matched at U of M in Internal Medicine & Pediatrics. 🩺🎓 The #TBD community is beyond proud. Congratulations, Doctor! #TeamTelomere #RareDisease

Some stories stop you in your tracks. 🩵 The Murray family ran and walked in memory of Dean and Lisa, lost too soon to TBDs. From Oregon to Alaska, they showed up. $2,755 raised so far. Every step a tribute: teamtelomere.network... #TeamTelomere #RareDisease #PulmonaryFibrosis

One finish line wasn't enough. 🩵 Katie Stevens, Team Telomere's Executive Director ran the @EveryLifeOrg NYC Half, then the Corvallis 5K, every mile for the 30M+ Americans living with rare diseases. $9,367 raised so far! Read her story: everylifefoundation.... #TeamTelomere

16 races. Gerald Wysoczynski Jr. isn't just riding across Texas, he's riding for a cure. As someone living with a Telomere Biology Disorder, every mile is personal. Help him reach $75K for TBD research:https://teamtelomere.networkforgood.com/projects/297443-gerald-wysoczynski-s-fundraiser #TBD

Every June, riders from across the country come together for the Million Dollar Bike Ride—and this year, Kevin Kelly will be in Philadelphia to carry the TBD community with him. Want to ride alongside him? Register at milliondollarbikeride.org #TeamTelomere #MDBR2026 #RareDisease

Still deciding on the Team Telomere Scientific Summit? Let the numbers speak: last Summit brought together 9+ disciplines, 40+ scientific talks, and 100% of attendees said they would apply what they learned. July 7 to 10 | Missoula, MT Register by May 8: teamtelomere.org/sci...

Looking for a space to connect, learn, and ask questions? Community Chats offer a welcoming space to connect with others and learn more about Telomere Biology Disorders (TBDs) from field experts. To explore upcoming sessions and register, visit: teamtelomere.org/resources/co...

Dust off your boots! Join us for Boots & Genes, Team Telomere's 6th annual Community Celebration & Award Ceremony on July 9th. Open to all. Register: teamtelomere.org/boots-and-genes-2026/ #TeamTelomere #BootsAndGenes #TTSummit2026 #RareDiseaseAdvocacy

We have been working diligently behind the scenes of our upcoming Summit! Over the next few weeks, we will be sharing more announcements, ways to be involved from afar, agendas, and more! Today we have the honor of introducing our Summit keynote speaker, Michael Beers!

Real rare disease progress starts with community, and Kendall Davis brought ours into the room. Team Telomere Board Member Kendall Davis recently attended the CNBC Cures Summit, joining leaders across media, finance, science, policy, and healthcare to discuss the future of rare disease progress.

Join us for our April Community Chat with host Dr. Alison Bertuch, topic Telomere Biology Disorder Genetics & Subtypes! Register now! Tuesday, April 14, 2026 at 7:00 PM ET Link: teamtelomere.org/resources/co... #TBD #Telomere #CommunityChats #Genetics #RareDisease #DyskeratosisCongenita

Today, on National Doctors’ Day, we are taking a moment to honor the extraordinary physicians who serve on Team Telomere’s Medical Advisory Board. Their leadership, expertise, and commitment are critical in helping us address and meet the needs of our community.

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.