NBDF Advocacy Helps Secure New ICD-10-CM Code for Glanzmann Thrombasthenia

NBDF Advocacy Helps Secure New ICD-10-CM Code for Glanzmann Thrombasthenia

PR Newswire

New code will improve care, research, and insurance clarity for people living with Glanzmann thrombasthenia

NEW YORK, Oct. 1, 2026 /PRNewswire/ — Advocacy efforts led by the National Bleeding Disorders Foundation (NBDF), in collaboration with the Glanzmann’s Research Foundation and the CHES Foundation, have resulted in a dedicated ICD-10-CM code for Glanzmann thrombasthenia, a rare inherited platelet disorder. The new code, D69.11, will help clinicians, researchers, insurance companies, and public health systems identify Glanzmann thrombasthenia more accurately and better understand the needs of people living with the disorder.

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Glanzmann thrombasthenia (GT) is a rare inherited platelet function disorder that affects the blood’s ability to clot properly. People with GT can experience frequent nosebleeds, easy bruising, bleeding gums, heavy menstrual bleeding, and other serious bleeding complications.

Until now, Glanzmann thrombasthenia was grouped under a general code with other qualitative platelet disorders, despite its distinct biology, symptoms, treatment considerations, and research needs. Conversations with HEMAB Therapeutics and other stakeholders highlighted the challenges of identifying and tracking people with Glanzmann thrombasthenia within existing healthcare data systems and the limitations of the current coding structure. They also pointed to emerging evidence that the disorder may be underdiagnosed and potentially more prevalent than previously recognized, reinforcing the need for more accurate identification and surveillance. As a result, it has been difficult to identify people with Glanzmann thrombasthenia in claims data and medical records and to accurately measure its prevalence, healthcare utilization, treatment patterns, and overall burden.

Another new code, D69.19 (Other qualitative platelet defects) was introduced at the same time to cover conditions like Bernard-Soulier syndrome and gray platelet syndrome.

For people living with Glanzmann thrombasthenia, the lack of a dedicated code has made it harder for the healthcare system to recognize its impact, including recurrent and sometimes life-threatening bleeding, iron deficiency, anemia, missed school or work, and complex treatment needs. ICD-10-CM is the standardized system used in the U.S. to code diagnoses in medical records, insurance claims, public health reporting, and research. A dedicated code will support more accurate documentation, more consistent billing and coverage decisions, better identification of people with GT for studies, and improved tracking of outcomes over time.

Submitted to the CDC’s National Center for Health Statistics (NCHS) by NBDF in 2024, the request was reviewed in 2025 and approved for implementation on October 1, 2026. The effort reflects NBDF’s commitment to advancing research, improving diagnosis, protecting access to appropriate care, and ensuring that people with rare bleeding disorders are recognized within the healthcare system. Healthcare providers and billing teams must update their EHR templates, billing systems, and superbills to use D69.11 for patient encounters on or after October 1, 2026.

“This achievement reflects what NBDF is uniquely positioned to do: bring together clinical and community experience, research evidence, and advocacy to solve problems that affect people with rare bleeding disorders,” said Maria E. Santaella, NBDF Senior Vice President of Research Strategy. “A dedicated code helps ensure that people with Glanzmann thrombasthenia are no longer hidden within a broad category. They can be counted, studied, and better served.”

About The National Bleeding Disorders Foundation (NBDF)

The National Bleeding Disorders Foundation (NBDF) is dedicated to finding cures for inherited blood and bleeding disorders and addressing and preventing these disorders’ complications through research, education, and advocacy, enabling people and families to thrive. NBDF serves people across the United States with all bleeding disorders, including hemophilia, von Willebrand disease, rare factor deficiencies, and platelet disorders. Formerly the National Hemophilia Foundation (NHF), NBDF has changed its name and domain from hemophilia.org to bleeding.org.

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SOURCE National Bleeding Disorders Foundation