Exciting breakthroughs in rare disease treatments mean more patients are gaining access to cutting-edge therapies - and specialty pharmacies are playing a crucial role in delivering these medications with expert support. But what exactly do they do, and when do they come into play?
AllMyHealth’s latest guide breaks it all down - exploring how specialty pharmacies work, their expanding role in patient care, and how individuals can engage with them. Plus, we spotlight some specialty pharmacies that cater to hemophilia.
Available in both text and audio formats - dive in today and share with your community!
In a study by Kotsiou et al. (2025), the health-related quality of life (HRQoL) for 29 adult male hemophilia A patients was assessed. Younger patients (18-30 years old) reported better HRQoL scores compared to older groups, with scores of 25.36 for the youngest group, 37.81 for those aged 31-45, and 43.71 for patients over 45. Physical health and mental well-being were particularly affected by age. Surprisingly, patients with moderate hemophilia reported worse HRQoL (42.31) than those with a severe form of the disease (34.85).
The study also found that the 'Sports/Free Time' domain was the most impacted, with the highest scores indicating significant limitations. However, patients reported better outcomes in mental health, work/study, family planning, and relationships, with very low scores in these areas compared to similar studies, suggesting a better quality of life. These findings emphasize the need for personalized support and interventions to improve the quality of life for hemophilia patients, especially in enhancing physical activity and managing the psychological impact of the disease. Kotsiou et al. highlight the importance of addressing the unique challenges faced by patients with moderate hemophilia.
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