National Hemophilia Foundation

Recent papers from National Hemophilia Foundation

1. Current Status of National Haemophilia Registries in the Asia–Pacific Region: An AHAD‐AP Registry Committee SurveyHaemophilia · 2026
2. Why is family disclosure of genetic risk so difficult? A collaborative analysis of 685 rare-disease patient experiencesEuropean Journal of Human Genetics · 2026
3. Sustained Effectiveness of Lanadelumab in Preventing Hereditary Angioedema Attacks: The ENABLE StudyClinical and Translational Allergy · 2026
4. Lived Experience Expert, community engagement, policy, and health equity, diversity, and inclusion elements of the Bleeding Disorders Research CollaborativeExpert Review of Hematology · 2026
5. Research agenda and related workforce requirements inspired by Lived Experience Experts and grounded in health equity for the Bleeding Disorders Research CollaborativeExpert Review of Hematology · 2026
6. Cross-cultural validation and reliability of the Korean version of the Haemophilia Activities ListBlood Research · 2026
7. Sebetralstat for on-demand treatment of hereditary angioedema: A pooled analysis of placebo-controlled clinical trialsWorld Allergy Organization Journal · 2026
8. Long-Term Integrated Safety and Efficacy of Garadacimab for Hereditary Angioedema ProphylaxisAdvances in Therapy · 2026
9. Low‐Dose Prophylaxis in Haemophilia: Experiences and Lessons From Resource‐Limited Countries in Asia and AfricaHaemophilia · 2026
10. Cost Comparison of Efanesoctocog Alfa vs Conventional Factor VIII Therapies for Major Surgeries in Severe Hemophilia ABlood Vessels Thrombosis & Hemostasis · 2026
11. Burden of disease in adult patients with hereditary angioedema: results from a multinational surveyOrphanet Journal of Rare Diseases · 2026
12. Burden of hereditary angioedema: results from a multinational survey of caregivers for adult and pediatric patientsOrphanet Journal of Rare Diseases · 2026
13. Antiphospholipid syndrome in the paediatric population: performance of ACR-EULAR classification criteria in a controlled cohortLupus Science & Medicine · 2026
14. Genetic landscape of Hemophilia A in Korea: Insights from precision diagnosis in Hemophilia ABlood · 2025
15. Quality of Life and Treatment Satisfaction in People With Haemophilia on Fitusiran Prophylaxis: Evidence From a Subset of ATLAS‐OLE Trial Participants Mainly From IndiaHaemophilia · 2025
16. Benchmarking prophylaxis with factor concentrates: reference data on annualized bleeding rates in children with severe hemophiliaHaematologica · 2025
17. Mission impossible? Quantifying aquatic resource consumption in historic period Estonia (AD 1100‒1800)ENLIGHTEN (Jurnal Bimbingan dan Konseling Islam) · 2025
18. Health-related quality of life in children with von Willebrand disease: results of the French real-life Willebrand Study Health-related Quality of Life studyJournal of Thrombosis and Haemostasis · 2025
19. Real-World Effectiveness of Lanadelumab in Hereditary Angioedema: Multicountry INTEGRATED Observational StudyThe Journal of Allergy and Clinical Immunology In Practice · 2024
20. Survival of Children with Acute Lymphoblastic Leukemia with Risk Group-Based Protocol Changes: A Single Center Experience with 460 Patients over a 20-Year PeriodCancer Research and Treatment · 2024