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
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
December 6, 2025 at 9:01 PM
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.
December 2, 2025 at 7:08 PM
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.
December 2, 2025 at 6:01 PM
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.
December 2, 2025 at 2:07 PM
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? 👀
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? 👀
November 27, 2025 at 5:00 PM
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? 👀
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...
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...
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.
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.
November 14, 2025 at 9:41 PM
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...
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!