Team Telomere
@teamtelomere.bsky.social
Nonprofit organization
International advocacy for those treating, researching, and affected by Telomere Biology Disorder. #TeamTelomere #DyskeratosisCongenita
International advocacy for those treating, researching, and affected by Telomere Biology Disorder. #TeamTelomere #DyskeratosisCongenita
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...
November 12, 2025 at 6:33 PM
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
#HonoringAllWhoServed #TeamTelomere
November 11, 2025 at 8:57 PM
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
#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
#PFFSummit2025 #TeamTelomere #PFCommunity
November 10, 2025 at 11:00 PM
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
#PFFSummit2025 #TeamTelomere #PFCommunity
The news as of late can feel dreary. This Giving Tuesday, we are changing the script for our feeds and timelines.
November 10, 2025 at 8:03 PM
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!
November 8, 2025 at 1:58 AM
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.
November 6, 2025 at 11:32 PM
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
November 5, 2025 at 9:26 PM
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.
November 4, 2025 at 8:00 PM
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.
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.
November 3, 2025 at 8:01 PM
🚨 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.
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.
Through our Legacy Program, Team Telomere continues to support bereaved families with connection, healing, and remembrance.
November 2, 2025 at 8:00 PM
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.
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.
November 1, 2025 at 10:02 PM
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!
October 31, 2025 at 3:36 PM
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. 🧬
October 30, 2025 at 7:02 PM
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
Register 👉 us02web.zoom.us/meeting/regi...
#TeamTelomere #CommunityChat #RareDisease #TelomereBiologyDisorders #MAB
October 28, 2025 at 7:01 PM
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
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
Your feedback keeps us supporting families & driving rare disease research.
✅ Do it here: greatnonprofits.org/write-review...
#TeamTelomere #RareCommunity #NonprofitSupport
October 24, 2025 at 7:01 PM
💙 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
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!
Over 120 people joined us in person and virtually to connect, learn, and raise a glass to rare disease research!
October 23, 2025 at 6:56 PM
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!
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.
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.
October 21, 2025 at 8:17 PM
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.
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.
October 15, 2025 at 2:48 PM
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.
October 13, 2025 at 8:51 PM
#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.
October 11, 2025 at 5:01 PM
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.
October 10, 2025 at 10:21 PM
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!
Sign up: teamtelomere.org/citizen-heal...
🎉 Hoodie giveaway winners announced + more to come!
October 8, 2025 at 8:14 PM
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!
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!
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!
October 3, 2025 at 7:50 PM
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!
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
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
October 2, 2025 at 7:01 PM
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
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
🔗 Register: us02web.zoom.us/meeting/regi...
#TeamTelomere #Genetics
October 1, 2025 at 8:51 PM
🧬 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
🔗 Register: us02web.zoom.us/meeting/regi...
#TeamTelomere #Genetics