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
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...
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...
November 25, 2025 at 9:37 PM
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...
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...
Tomorrow (Nov 19) at 7 PM ET, Citizen Health is hosting a webinar on their AI Advocate tool—built to help interpret genetic/medical reports, prep for school meetings, decode provider notes, and more. Register here → ciitizen.zoom.us/webinar/regi...
November 19, 2025 at 12:34 AM
Tomorrow (Nov 19) at 7 PM ET, Citizen Health is hosting a webinar on their AI Advocate tool—built to help interpret genetic/medical reports, prep for school meetings, decode provider notes, and more. Register here → ciitizen.zoom.us/webinar/regi...
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 19, 2025 at 12:34 AM
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.
Join the Team Telomere Turkey Trot and move for the mission. Walk, run, or roll - every mile raises awareness and supports the TBD community.
November 17, 2025 at 8:38 PM
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.
Join the Team Telomere Turkey Trot and move for the mission. Walk, run, or roll - every mile raises awareness and supports the TBD community.
Since this treatment uses the nucleosides dC and dT, many in our Telomere Biology Disorder community are wondering what this means for the ongoing nucleoside therapy trial for TBDs (NCT06817590). Read more in our graphic and by following this link: bit.ly/48egqy1.
November 14, 2025 at 9:41 PM
Since this treatment uses the nucleosides dC and dT, many in our Telomere Biology Disorder community are wondering what this means for the ongoing nucleoside therapy trial for TBDs (NCT06817590). Read more in our graphic and by following this link: bit.ly/48egqy1.
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.
From #FactFridays to community features and special announcements, follow along to stay up to date on all we have in store! To kick off the month, join us by changing your profile picture to one of our TBD Awareness Month logos! Let’s create an ocean of support!
November 1, 2025 at 10:02 PM
From #FactFridays to community features and special announcements, follow along to stay up to date on all we have in store! To kick off the month, join us by changing your profile picture to one of our TBD Awareness Month logos! Let’s create an ocean of support!
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.
Dr. Rodrigo T. Calado is a member of our Medical Advisory Board as well as our South America Medical Advisor. Dr. Calado has has helped to characterize the molecular genetics of Telomere Biology Disorders and work to develop novel therapies.
October 15, 2025 at 2:49 PM
Dr. Rodrigo T. Calado is a member of our Medical Advisory Board as well as our South America Medical Advisor. Dr. Calado has has helped to characterize the molecular genetics of Telomere Biology Disorders and work to develop novel therapies.
Next up is Mayra Garcia, our Hispanic/Latino Ambassador! From the very first day her son was found to have a mutation in DKC1, her and her family looked for ways to advocate for him and search for a perfect match. She always sought the very best for Julian - and brings this to our community.
October 15, 2025 at 2:48 PM
Next up is Mayra Garcia, our Hispanic/Latino Ambassador! From the very first day her son was found to have a mutation in DKC1, her and her family looked for ways to advocate for him and search for a perfect match. She always sought the very best for Julian - and brings this to our community.