📣 Come visit and learn more about Engraft at the Tandem Conference! 📣 Join us on Thursday (or Today) at the poster session from 6:45-7:45 pm! To make it even more exciting, we have a special challenge for you.

This weekend’s removal of key experts at The NIH U.S. FDA , and CDC —paired with executive orders impacting federal funding—threatens vital programs that rare disease communities and the entire nation depend on. 🗣️ Tell Congress about the importance of their strong

Today we published encouraging early data from our Phase 1/2 #ClinicalTrial in NEJM Evidence. The study demonstrates telomere elongation and increased ANC in two patients with #TelomereBiologyDisorders following EXG-34217 treatment. Read more here: bit.ly/4gUvylj

First Gene Therapy Trial for #TelomereBiologyDisorders Shows Promising Results. #Elixirgen #CincinnatiChildrens #Dyskeratosis #RareDiseases National Organization for Rare Disorders (NORD) CincyChildren's CBDI scienceblog.cincinnatichildrens.org/first-gene-the…

It’s International Rare Disease Week! How do you plan on getting involved? Many members of Team Telomere have arrived in Washington DC to be a part of the 14th Annual EveryLife Rare Disease Week. We know not everyone can go across the globe to advocate but you can from home.

This study examines the significant social-emotional impact of #cGVHD on pediatric and AYA survivors, leading to academic challenges and chronic absenteeism. Read the full study: ow.ly/Hmik50V5Bmy

People in the TBD community are more than numbers—we are real people uniting for change. #RareDiseaseDay #teamtelomere 💙

Camp Sunshine applications for Team Telomere’s Community Summit are open! Head to our website to apply today! teamtelomere.org/resources/camp… #TeamTelomere #TTCamp25 #Telomere #DyskeratosisCongenita #BetterTogether

Pursue your dreams with the EveryLife Foundation #RAREis Scholarship! EveryLife & Amgen will provide one-time awards of $5,000 scholarships to 104 rare disease recipients. Apply 3/17/25-4/28/25 at everylifefoundation.org/rare-scholarsh…. #TeamTelomere #TelomereBiologyDisorder #RareDisease

Download your FREE copy of the TBD Diagnosis and Management Guidelines teamtelomere.org/diagnosis-mana…, a cornerstone resource with input from 60 clinicians/researchers that provides critical information to our community #TeamTelomere #TelomereBiologyDisorder #RareDisease

Gene therapy for #telomere biology disorders 🧬! Report of first 2 patients NEJM Evidence by Kas Myers using vector to increase expression of ZSCAN4 to elongate telomeres. Some TL elongation in HSPCs but low numbers. Will be interested to see more data! evidence.nejm.org/doi/pdf/10.105…

Learn more about quality improvement by checking out Steffani's abstract that we shared at Tandem. Link in our bio!

April is #HeadAndNeckCancer Awareness Month. #TeamTelomere is raising awareness in advocacy and support of our Telomere Biology Disorder community. Learn more in the TBD Diagnosis & Management Guidelines: teamtelomere.org/diagnosis-mana… #TelomereBiologyDisorder #RareDisease

Join us for Cocktails & Chromosomes - Minnesota on October 18th at the Mayo Civic Center! Celebrate our community with an elegant evening of meaningful moments. Tickets are open! Secure your spot + view sponsorships: teamtelomere.org/cocktails-and-…

Join us for Cocktails & Chromosomes - New York City on August 5th at Hogan Lovells! Celebrate our community with an elegant evening of meaningful moments. Tickets are open! Secure your spot + view sponsorships:teamtelomere.org/cocktails-chro…

📢 Join us for our June Community Chat with Dr. Suneet Agarwal (Boston Children’s & Dana-Farber) on Bone Marrow Transplants & emerging therapies. Great chance to learn, ask questions & connect! 📅 Register: us02web.zoom.us/meeting/regist… #TeamTelomere #BMT #RareDisease

Feeling like the worst “Rainy Day” has hit your hematology lab? ASH is deploying some significant umbrellas. More details soon! Watch #ASH

Thanks to YOU, Team Telomere hit $25,000 for the Million Dollar Bike Ride! 💙 Now we’re aiming for $40K - and we know we can do it. On #FundraiserFriday, Katie Stevens reminded us: science moves at the speed of need. Every $1K honors a patient. 💪

TP53-mutated acute myeloid leukemia and myelodysplastic syndrome are now well established as their own unique diagnostic entity, characterized by an exceptionally poor prognosis and inadequate therapeutic options. ow.ly/XMBu50WagUw #BloodSpotlight #myeloidneoplasia

Ayman Soliman was granted asylum in the United States and has spent years serving children and their families as the only Muslim chaplain at one of the best children’s hospitals in America. 🧵👇🏼