New MASAC Recommendations on Iron Deficiency

MASAC Recommendations on Iron Deficiency in Bleeding Disorders

We’re pleased to share a newly published set of recommendations from the National Bleeding Disorders Foundation (NBDF) Medical and Scientific Advisory Council (MASAC), focused on the screening and management of iron deficiency and iron deficiency anemia (IDA) in individuals with inherited bleeding disorders.

This publication represents an important step forward in addressing a long-standing gap in care. Iron deficiency—both with and without anemia—is common, underrecognized, and often undertreated in people living with bleeding disorders, including those with HHT.

📄 Read the full publication here

Why this matters for the HHT community

These recommendations explicitly include HHT and highlight the importance of:

• Routine and ongoing screening for iron deficiency, regardless of age or sex

• Recognizing iron deficiency even before anemia develops

• Using more appropriate thresholds for diagnosis, including:

  • Hemoglobin < 13 g/dL for anemia

  • Ferritin < 50 ng/mL for iron deficiency

The inclusion of HHT in these guidelines is especially meaningful, as it reflects growing recognition across the broader bleeding disorders field of the unique challenges faced by this community.

Key highlights from the recommendations

The MASAC guidance provides a comprehensive framework for improving care, including:

• Annual screening for iron deficiency in all individuals with inherited bleeding disorders, with additional testing during high-risk periods (e.g., bleeding episodes, pregnancy, or surgery)

• A multidisciplinary approach to diagnosis and management, involving both primary care and specialists

• Clear recommendations for laboratory testing, emphasizing that hemoglobin alone is not sufficient

• Guidance on treatment, including oral and intravenous iron, and when parenteral iron should be considered

• The importance of addressing underlying bleeding to prevent recurrent iron deficiency

Broader Implications

These recommendations contribute to ongoing efforts to improve recognition and management of iron deficiency in bleeding disorders. By providing clearer clinical guidance, they support:

• More consistent identification of iron deficiency in clinical practice

• Improved access to appropriate therapies, including intravenous iron when indicated

• Greater standardization of care across institutions and providers

We encourage HHT clinicians and researchers to review and consider how these recommendations may be applied within their own practice settings to support earlier identification and more consistent management of iron deficiency in individuals with HHT.