In her own words: “You are not just part of this ecosystem. You are the reason it exists.” Read more of Kendall's reflections on our Research Corner: teamtelomere.org/research-cor...
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Posts by Team Telomere
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.
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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
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Today, we celebrate all the physicians who have positively impacted our community. Your advocacy, extra steps to show compassion and care, time to educate and continue learning, and work to push forward the bounds of science are seen and appreciated beyond words can express - thank you!
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We are also grateful to have welcomed two new members to our Medical Advisory Board this year: Dr. Doug Simonetto and Dr. Christine Kim Garcia!
You can read more about our amazing Medical Advisory Board on our website under the About Us page.
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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.
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Funds raised through this effort will move us toward our next research grant.
Donate now: teamtelomere.networkforgood.com/projects/294...
Thank you for helping fuel the miles and the mission!
#26for26
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Over the month of February, we had the joy of honoring 26 incredible community members. As Katie heads to the start line, she carries those honorees with her - along with so many others across our community.
This race marks the beginning of Team Telomere’s 2026 Research Season.
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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!
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We are thrilled for all that is ahead!
Eva is a biomedical researcher and science communicator. She is completing her PhD in the Stone Research Group at UC Santa Cruz; her thesis investigates the link between human telomerase RNA and TBDs. Read more about Eva: teamtelomere.org/about-us/
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In this role, Eva will create educational materials that explain complex science in clear, accessible ways for diverse audiences. She has demonstrated a real strength in scientific communication across scientific and lay audiences, helping make important research more understandable and meaningful.
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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.
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Kendall’s takeaways also highlight: patient advocacy organizations are not only support systems for families, but often key builders of the infrastructure that makes research, clinical trials, and progress possible.
Read Kendall’s full reflection on our website: teamtelomere.org/research-cor...
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In her reflection, Kendall points to a message shared during the event by NCATS Director Joni Rutter: “Rare Disease Day is where our science meets accountability.” That idea carries particular weight in the rare disease space.
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Rare Disease Day at the NIH, hosted by the NIH’s National Center for Advancing Translational Sciences (NCATS), brought together patients, researchers, regulators, industry leaders, and advocates committed to accelerating progress for people living with rare diseases.
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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.
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Laura brings thoughtfulness, dedication, and a strong belief in bridging science and advocacy. We are incredibly grateful to have her helping drive this work forward.
Join us in congratulating Laura! Read more about Laura on our About Us page: teamtelomere.org/about-us/
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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.
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Read Luke’s reflection on Research Corner of our website: teamtelomere.org/research-cor...
The full HHS panel session can also be viewed here: www.youtube.com/live/XWTO5kh...
Stay tuned this week as we continue sharing reflections from Rare Disease Week and highlighting why advocacy matters.
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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.
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While we are highlighting a few, we recognize there are so many more women across our community who are paving the way - from patients, caregivers, family members, advocates, clinicians, and researchers.
Today, we celebrate you.
Happy International Women’s Day. ✨
#InternationalWomensDay #IWD2026
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This carousel is a tribute to a few of the women at Team Telomere. In the spirit of a recent social media trend, we paired their roles today with childhood photos as a reminder that every leader, advocate, clinician, researcher, and changemaker once started as a girl with a future unfolding.
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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.
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📢 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...
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Team Telomere staff will be on hand to provide tech support and help facilitate connections. We look forward to seeing you there.
Register now! Tuesday March 10th, 2026 7PM ET
Link: teamtelomere.org/resources/co...
#TelomereBiologyDisorders #TeamTelomere #CommunityChats #LiverComplications
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Dr. Doug Simonetto will lead this Community Chat, providing insight into liver manifestations associated with TBDs, surveillance strategies, and management considerations. This session will also offer ample time for questions in a supportive space.
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Liver involvement in Telomere Biology Disorders is increasingly recognized and can present in many different ways, from abnormal liver tests to portal hypertension, cirrhosis, and transplant considerations.
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Join us for our March Community Chat with host Dr. Doug Simonetto!
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Team Telomere staff will be on hand to provide tech support and help facilitate connections. We look forward to seeing you there.
Register now! Monday, March 9th, 2026 at 2pm ET/7pm UK
Link: teamtelomere.org/resources/co...
#TelomereBiologyDisorders #TeamTelomere #CommunityChats #OpenForum
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Jacquie Roskell and Dr. Sharon Savage will help guide an informal, supportive discussion focused on shared questions, lived experiences, and connection across the UK TBD community. Whether you are newly diagnosed, navigating long-term care, or supporting a loved one, all are welcome.
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