New interim ATHN 16 data show that eptacog beta effectively controlled breakthrough bleeds in people with hemophilia A and inhibitors receiving emicizumab, with most bleeds resolved after a single dose and no new safety concerns. tinyurl.com/ATHN16-Eptacog

Following participants over time reveals what single studies can't. At #ISTH2026, ATHN shared one of its first analyses linking ATHN 8 and ATHN Transcends, demonstrating increased prophylaxis use over time in people with moderate hemophilia. #RealWorldEvidence #BleedingDisorders #ATHN

Attending #ISTH2026? Join ATHN for our oral and poster presentations highlighting the latest research in hemophilia, von Willebrand disease, rare coagulation disorders, and real-world evidence. We look forward to seeing you in Paris, July 11–15! #ATHN #ISTH2026 #Hemostasis

New publication! Congratulations to the ATHN 16 investigators and research team on the publication of Safety and real-world effectiveness of eptacog beta with emicizumab prophylaxis: an interim analysis of ATHN 16 in Blood Vessels, Thrombosis & Hemostasis. Read the article: tinyurl.com/yrnf374u

Holiday Reminder. ATHN Transcends central laboratories may have modified schedules around the Fourth of July holiday. Please review the recent email communication and contact support@athn.org with any questions.

Congratulations to the first HTCs and investigators enrolling patients in the ATHN Transcends: INHIBIT Module! This important study will help advance our understanding of inhibitor development in children starting prophylaxis treatment. Learn more: tinyurl.com/ffd5f76b

Big ideas. Bold research. Real impact. Join the conversations shaping the future of bleeding disorders care, research, and data-driven discovery. Abstract Deadline: June 15 🔗 athn.org/events/data-... #ATHNDS26 #Hemophilia #RareDisease #BleedingDisorders

⏰ Early registration for ATHN Data Summit 2026 ends June 18! Join us Oct. 21–22 in New Orleans for two days of discovery, collaboration, & innovation in blood disorders care as we celebrate 20 years of progress powered by data & driven by purpose. Register now and save at athn.org/events/data-...

⏳ The countdown is on! Abstract submissions for #ATHNDS26 close on June 15. Share your discoveries, showcase your research, and join the scientific conversations advancing blood disorders care, research, and innovation. Submit your abstract today: athn.org/events/data-summit.html

Call for Abstracts: ATHN Data Summit 2026. Share your discoveries. Advance future care. Submit your abstract highlighting research, ATHNdataset insights, quality improvement initiatives, and innovation across the blood disorders community. Deadline: June 15, 2026 Learn more: tinyurl.com/5n7bmxcc

New research published in JPHO used the ATHNdataset to examine bleeding phenotypes in inherited platelet function disorders. Real-world data continues to advance understanding, support research, and help shape the future of blood disorders care. journals.lww.com/jpho-online/...

Bleeding Phenotypes in Inherited Platelet Function... : Journal of Pediatric Hematology/Oncology

ned. Objective: To characterize the bleeding phenotype, treatment patterns, and diagnostic distribution of IPFDs across the United States using the national ATHNdataset. Methods: We conducted a retrospective cohort study using the ATHNdataset, a deidentified registry maintained by the American Thrombosis and Hemostasis Network. Clinical outcomes, including bleeding events, laboratory data, treatments, and procedures, were analyzed for participants with IPFDs between 2013 and 2022 and with active follow-up from January 2021 to December 2022. Results: Among 2302 individuals with IPFDs, 8.1% as GT, 2.4% as BSS, 7.0% as granule defects, and 81.6% as IPFD-other. Among 985 participants with active follow-up, 236 bleeding events were reported across 251 patients. The most common events were epistaxis (42.8%), followed by soft tissue (14.4%) and oral bleeding (13.9%). Notably, intracranial hemorrhage occurred in 8 patients and joint bleeds in 82, reflecting significant morbidity across all subtypes. Median ISTH-BAT scores were elevated—13 in GT, 16 in dense-granule defects, and 7 in unclassified IPFDs—exceeding reported population norms. Regarding hemostatic management, antifibrinolytics were used in over half of all patients, with desmopressin and platelet transfusions being used less frequently. Conclusion: By defining the clinical spectrum, treatment utilization, and residual diagnostic uncertainty across IPFDs, this study underscores the importance of improving diagnostic precision and care for patients with platelet function disorders in the modern era....

journals.lww.com

Early Registration for ATHN Data Summit 2026 has been extended through June 18! Join us Oct. 20–22 in New Orleans for research spotlights, real-world data insights, interactive discussions, specialty tracks, posters, networking & more as we celebrate 20 years of progress. #ATHNDS26

75 activated HTCs. 700+ participants enrolled. One nationwide effort advancing bleeding disorders research. 🩸 This #ClinicalTrialsDay, we thank the physicians, nurses, coordinators, data managers, researchers, & HTC teams helping turn participation, data, and collaboration into progress.

Across the #ATHN Network, physicians, nurses, coordinators, data managers, & research professionals are working together to advance discovery & improve care in bleeding disorders. This #ClinicalTrialsDay, we celebrate the people powering progress. #Hemophilia #ResearchRising

Registration Now for Georgia Clinical Trials Day 2026! 📅 June 13 | Atlanta, GA Join clinical research leaders for conversations on innovation, workforce readiness & patient access. Featuring Policy & Clinical Research Expert David Vulcano. Seats limited. Register Now: tinyurl.com/ClinicalTria...

There’s something for everyone at #ATHNDS26. Data managers, physicians, nurses, researchers, APPs, & healthcare leaders will gather for sessions on research, clinical care, data quality, operations, emerging science, posters & networking. Early Bird registration ends May 25. Register now and save.

During #NWHW2026, we’re raising awareness about bleeding disorders in women & girls through data from #CommunityCounts. This infographic highlights key insights helping advance awareness, education, & care across the community. Spanish-language version available. Learn More: tinyurl.com/yn8c9jp9

⏰ Just 2 weeks left to save with Early Registration for ATHN Data Summit 2026! Join us Oct. 21–22 for: 🔹 Research & ATHNdataset insights 🔹 EMR integration & innovation 🔹 Physician, nursing & data sessions 🔹 Posters & networking Early Reg closes May 25. Register NOW! #ATHNDataSummit2026

Celebrating #ThePowerOfNurses w/ Norma Wolf, MBA, MSN, RN, Director of the Community Counts Surveillance Project at ATHN. For nearly 30 years, Norma has advanced care, research, & surveillance for people living w/ blood disorders through collaboration with the CDC & ATHN Affiliates. #NursesWeek2026

Celebrating #NationalNursesWeek 💙 Meet Anna Wiseman, BSN, RN, CPN, CCRC—research nurse at @childrensmercy.org. Inspired by her own patient journey, she now bridges care + innovation for families in hematology—and goes the distance as a marathon runner. #ATHN #NursesWeek

Call for Abstracts now open for the #ATHN Data Summit 2026. This is an opportunity to share research, data insights, and quality improvement work with the bleeding disorders community. Submit by June 15, 2026: support@athn.org Details: athn.org/events/data-...

#ATHN HTC Spotlight: Thanks to Dr. Clay Cohen, Janine Starks, & team at Texas Children’s Hemophilia & Thrombosis Center for enrolling 28 participants in #ATHNTranscends. “Our patients are always willing to help future generations,” says Starks. Advancing research through trust, compassion, & care.

10 years of advancing care & connection in the VWD community 💙 Join the 2026 Severe VWD Conference—bringing patients, caregivers & experts together. Travel, hotel & meals available for eligible attendees. Learn more + register: www.vwdconnect.org/2026-nationa... #VWD #RareDisease #CommunityCare

JOIN US! At ATHN Data Summit 2026, the focus is on turning data into action: • Physician Think Tank – clinical insight • Nursing Track – advancing care delivery • Data Management & EMR Integration – stronger data, better decisions Join the conversation → athn.org/events/data-...

Today, we recognize the clinicians, researchers, and advocates moving care forward across the bleeding disorders community. ATHN supports this work through data, research, and collaboration to help improve the lives of patients and families.

Registration is open for ATHN Data Summit 2026. Join us October 20–22 in New Orleans for three days of data-driven insights, collaboration, and progress across the blood disorders community. Early bird pricing runs through May 25—don’t miss it. Register Now: athn.org/events/data-...

For 20 years, ATHN has worked alongside a dedicated community to advance research, strengthen data, and improve care for people with blood disorders. This progress is driven by patients, families, partners, and affiliates working together. Learn more: athn.org

Learn how we support people with Bleeding Disorders at ATHN.org.

Don't miss out! athn.org/events/data-...

Thank you to everyone who has participated in the ATHNdataset. The blood disorders community is phenomenal!