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!

Shop Team Telomere's wishlist and make an impact! You can directly support individuals impacted by Telomere Biology Disorders by shopping from our Team Telomere Wishlist!

Join us for our January Community Chat on Tuesday, January 6th at 7pm ET! This month’s chat is with Dr. Jane Koo, MD of Cincinnati Children’s Hospital on the topic: The Skeletal System & Telomere Biology Disorders.

Dear friends - thank you for your gift of giving. Because of you, we reached our $45,000 match and raised over $95,000 toward our $100,000 goal.

Happy Holidays & Merry Christmas from Team Telomere! As a holiday gift from us to you, listen to the songs that reminded us of community: open.spotify.com/playlist/0y8.... Wishing you peace, warmth, and joy today and this season!

Team Telomere’s 2026 Young Investigator Draft pick is Dr. Da (David) Zhang, Columbia University Irving Medical Center! We are beyond grateful to be advocacy partners with Uplifting Athletes and the Young Investigator Draft. Read more: www.upliftingathletes.org/2025/12/16/y...

Happy Hanukkah 2025! 🕎 With each candle, we wish you moments of peace, comfort, and reflection. May this season hold space for joy and all that this year has carried. Sending our wishes that your home be warm, your candles bright, and your celebrations full of peace and blessings. Chag Sameach!

Team Telomere is thrilled to once again represent the Telomere Biology Disorder community at the American Society of Hematology Annual Meeting! Visit us at Booth 1811 - connect, grab some TBD resources, and treat yourself to telomere goodies! #ASH25

As we continue our Good News Hour celebration, we’re reminded of something that is at the heart of Team Telomere: we are truly a global advocacy organization. Our community spans continents and time zones - yet we are united by connection.

In a powerful interview, Dr. Ferrer and anchor Jena Robertson shared why micro-meetings matter - short, focused conversations that help families navigate diagnosis and care with clarity, confidence, and support.

Today on #GivingTuesday, we’re celebrating the good news shining across the Team Telomere community.

This season of gratitude reminds us how thankful we are for the Team Telomere community. We are grateful for you and the impact you help create. To add a little fun to the holiday - can you find all 23 Team Telomere logos hidden in the photo? 👀

Giving Tuesday is just 1 week away! Team Telomere is hosting The Good News Hour—a full day of stories of hope, progress, and community from across the TBD world, shared by our incredible “newscasters.” Share your own Good News Hour moment: teamtelomere.networkforgood.com/projects/262...

As we continue Telomere Biology Disorder Awareness Month, we’re spotlighting how far TBD research has come—and the work still ahead. Every step forward has been driven by patients, families, clinicians, and researchers working together.

November is Telomere Biology Awareness Month - let’s trot! 🦃 Join the Team Telomere Turkey Trot and move for the mission. Walk, run, or roll - every mile raises awareness and supports the TBD community.

This Fact Friday, we are sharing recent research news. The FDA recently approved KYGEVVI, a therapy based on deoxycytidine (dC) and deoxythymidine (dT), for thymidine kinase 2 deficiency (TK2d), a rare mitochondrial disease.

In for TBD Awareness Month - our updated educational video series is available! We brought together incredible experts and advocates to share insights on TBDs 101, patient-centered research, hematology, pulmonology, new and emerging therapies, adult care, and more: teamtelomere.org/video-educat...

Today and every day, we honor veterans in our community who’ve served with strength and dedication. This #VeteransDay, we celebrate Damian, Lisa, Nicole & Mike for their service to our country and the TBD community. 💙 #HonoringAllWhoServed #TeamTelomere

We’re excited to share that Team Telomere will be at the Pulmonary Fibrosis Foundation Summit, Nov 13–15! 🌟 Visit Booth #26 to learn about Telomere Biology Disorders, PF, testing, and resources for our community. 💙 #PFFSummit2025 #TeamTelomere #PFCommunity

The news as of late can feel dreary. This Giving Tuesday, we are changing the script for our feeds and timelines.

Throughout #Telomere Biology Disorder #Awareness Month, we are dedicating Fridays to spreading education and awareness. Each “Fact Friday,” we’ll highlight important science and how ongoing #research connects to care and advocacy. Today we are talking about what #telomeres are - check out our video!

Last week our Executive Director, Katie Stevens, was invited to attend the inaugural Galien Patient Summit in New York City. Katie was invited for our work on building international Centers of Excellence and our relationship with the Chan Zuckerberg Initiative.

This year’s TBD Awareness Month merch celebrates every part of what makes and drives our community. Whether you go for the icon, groovy, or emblem design, there’s a perfect piece of merch to show your support and spark conversation wherever you go. www.bonfire.com/store/team-t... #TBDawareness

Being nearest to the community, we know that navigating TBDs can be overwhelming. That is why we are especially excited for Citizen Health's new AI Advocate, a tool designed to help get instant, clear answers based on one’s medical history.

🚨 Reminder 🚨 Join us for our November Community Chat on Tuesday, November 4th at 7pm ET! This month’s chat is a special opportunity to connect directly with members of Team Telomere’s Medical Advisory Board.

Today, on Día de Muertos, we honor and remember the loved ones we’ve lost within our Telomere Biology Disorder community. 💛 Through our Legacy Program, Team Telomere continues to support bereaved families with connection, healing, and remembrance.

It is officially November, which means it is Telomere Biology Disorders (TBD) Awareness Month! Each November, we take time to educate the world about TBDs and celebrate our incredible community.

Happy Teloween! It’s one of our favorite times of year when we see a lot of community smiles!

Over 120 attendees from 11 countries came together for our Micro Meeting and Cocktails & Chromosomes event - diving deep into diagnosis, management, and driving actionable progress for the TBD community. 🧬

Join us Nov 4, 2025 at 7PM ET for our Community Chat with members of Team Telomere’s Medical Advisory Board! 🧬 Ask questions, hear expert insights, & connect with the TBD community. Register 👉 us02web.zoom.us/meeting/regi... #TeamTelomere #CommunityChat #RareDisease #TelomereBiologyDisorders #MAB

💙 Team Telomere is powered by YOU! Help us keep our nonprofit status by completing our quick community review 🧬 Your feedback keeps us supporting families & driving rare disease research. ✅ Do it here: greatnonprofits.org/write-review... #TeamTelomere #RareCommunity #NonprofitSupport

What do you get when you mix science, community, and a splash of fun? Our Micro Meeting + Cocktails & Chromosomes event! 🧬🍸 Over 120 people joined us in person and virtually to connect, learn, and raise a glass to rare disease research!

There is much to celebrate in October - yesterday was the start of Diwali, the Festival of Lights! To all who observe, we’re wishing lots of joy, light, and mithai this Diwali! We hope that this marks the beginning of a bright and prosperous new year.

As National Hispanic Heritage Month comes to an end, Team Telomere celebrates the achievements and cultural contributions of Latinx Americans. Established in 1988, this month honors the rich histories and diversity of the Latinx community and their profound impact on United States culture.

#IndigenousPeoplesDay went into effect in the United States in 2021. We celebrate by honoring Indigenous Peoples and acknowledging the health disparities found in this nation.

Every event Team Telomere hosts is designed to support the community we love, allowing opportunity for you to be involved. From Base Camp activities and games to Camp Sunshine goodies, we can always count on special people to sponsor our events.

Today is World Mental Health Day, a reminder that mental health is just as important as physical health - and that no one should face their struggles alone.

We’ve launched a digital natural history study for TBDs! Help accelerate research by securely organizing your de-identified health data. Sign up: teamtelomere.org/citizen-heal... 🎉 Hoodie giveaway winners announced + more to come!

Meet our 2025 Nancy Cornelius Scholarship Fund Recipient, Andrew Aguilar! Andrew wrote “despite the condition I live with, I am convinced that it is not an obstacle to achieving my goal.” And we couldn’t agree with him more!

As Yom Kippur begins, we’re taking a moment to reflect, reset, and reconnect. To everyone observing, we’re sending strength for a meaningful fast and a peaceful day of reflection. G’mar Chatima Tova - wishing you clarity, compassion, and a sweet year ahead. #YomKippur #TeamTelomere #Community

🧬 Join our October Community Chat with Dr. Alison Bertuch (Baylor College of Medicine) to explore genetics & subtypes of Telomere Biology Disorders (TBDs). A chance to learn, ask questions & connect! 🔗 Register: us02web.zoom.us/meeting/regi... #TeamTelomere #Genetics

September is Pulmonary Fibrosis Awareness Month! Team Telomere has been having ‘Pulmonary Fibrosis Fridays’ to share key education and highlights.This week, we are focusing on updates in and the importance of ongoing research in Pulmonary Fibrosis (PF) and Telomere Biology Disorders (TBDs)!

✨ Join us for Team Telomere’s 5th annual gala: Cocktails & Chromosomes - MN! 📍 Mayo Civic Center, Rochester, MN 🗓️ Oct 18, 2025 | 6–10 PM Celebrate the TBD community—patients, families, advocates, clinicians & researchers.

We are so excited to share that a new Telomere Biology Disorder clinical trial is now open: Nucleoside Therapy in Patients With Telomere Biology Disorders!