NewsRSSMay 6
A clergy member shares a personal story about hemophilia, a bleeding disorder that runs in families, and reflects on not having the opportunity to ask their mother about the family's medical history before she passed away. The article emphasizes how important family conversations about genetic conditions can be for understanding health risks.
WHY IT MATTERSPeople with hemophilia in their family need to understand their own risk and genetic inheritance pattern, which requires knowing family medical history — information that may be lost if not discussed while relatives are alive.
PipelineRSSMay 5
The FDA has given special fast-track status to a new stem cell therapy being developed by Expression Therapeutics for hemophilia A, a bleeding disorder. This designation means the therapy can be reviewed faster than usual. The therapy is designed to be a one-time treatment that could provide lasting relief from hemophilia A symptoms.
WHY IT MATTERSIf successful, this one-time stem cell therapy could eliminate the need for regular blood clotting factor infusions that hemophilia A patients currently require multiple times per week.
NewsRSSMay 5
People with hemophilia often feel very tired, which can make daily activities hard. You can help manage this fatigue by spreading out your activities throughout the day, getting better sleep, and taking your hemophilia treatment as prescribed along with healthy habits like exercise and good nutrition.
WHY IT MATTERSFatigue is a common but often overlooked symptom in hemophilia that significantly impacts quality of life, and learning practical management strategies can help patients maintain independence and reduce the burden of daily activities.
NewsRSSMay 4
A patient with hemophilia found that starting a regular exercise routine at a gym has been beneficial for his health. His wife shares their story about how this fitness journey began as simple curiosity and has become an important part of managing his condition. The article highlights how people with hemophilia can safely participate in physical activity.
WHY IT MATTERSThis patient story demonstrates that people with hemophilia can safely engage in regular exercise, which may help improve joint health and overall quality of life when done with appropriate precautions.
ResearchRSSMay 1
A new study found that many women who carry hemophilia gene mutations are not getting proper medical care, even though they live in countries with good healthcare systems. These women often don't know they carry the mutation and aren't included in official patient lists. The main problem is that they can't easily access genetic testing to find out if they have the mutation.
WHY IT MATTERSWomen with hemophilia mutations may experience bleeding problems and need specialized care, but without diagnosis and medical attention, they won't know to seek treatment or get proper support for their health.
AdvocacyRSSMay 1
People with bleeding disorders often experience internal bleeding that isn't visible on the skin, like bruises that develop slowly or bleeding inside the body. When doctors or others dismiss their symptoms because they don't see obvious blood, it can be dangerous and delay proper treatment. This article emphasizes why healthcare providers and others need to listen to patients' descriptions of their symptoms, even when bleeding isn't immediately obvious.
WHY IT MATTERSPatients with bleeding disorders face a critical gap between their actual symptoms and how others perceive them—invisible bleeding can be just as serious as visible bleeding, but may go untreated if dismissed by healthcare providers.
ResearchRSSMay 1
A researcher studied how different religions mention bleeding disorders in their sacred texts and religious teachings. This work explores the intersection of theology and medical conditions, looking at how various faith traditions have historically addressed and understood bleeding problems. The research is part of a broader effort to understand bleeding disorders from multiple perspectives, including religious and cultural viewpoints.
WHY IT MATTERSUnderstanding how different religious traditions address bleeding disorders can help patients and caregivers navigate religious practices, dietary restrictions, and medical decisions that may be influenced by their faith while managing conditions like hemophilia.
NewsRSSApr 30
A parent shares how their two sons with hemophilia, a bleeding disorder, experience moments of freedom when they can live their lives without constantly worrying about internal bleeding in their joints. The article highlights how important it is for young people with hemophilia to have times when their condition doesn't control everything they do.
WHY IT MATTERSThis personal story illustrates the daily quality-of-life challenges hemophilia patients face beyond just medical treatment, showing how access to effective bleeding prevention allows young adults to pursue normal activities and independence.
NewsRSSApr 29
A hospice chaplain reflects on how a hospital vending machine triggered memories of frequent emergency room visits with their son who has hemophilia. The article explores the emotional weight of managing a child's rare bleeding disorder and the small moments that bring those experiences back.
WHY IT MATTERSParents of children with hemophilia often face unpredictable medical crises requiring emergency care, and this personal account validates the emotional and logistical burden families experience managing a chronic bleeding disorder.
AdvocacyRSSApr 28
Thomas Graham shares practical tips for people with hemophilia who want to travel safely. He explains how to prepare for medical emergencies while away from home, how to find doctors and hospitals that can help, and how to speak up for yourself when you need medical care. His advice helps travelers with hemophilia feel more confident and ready.
WHY IT MATTERSPeople with hemophilia face unique challenges when traveling, such as finding emergency care that understands their bleeding disorder and managing their treatment supplies away from home — this article provides real-world strategies from someone living with the condition.
Clinical trialRSSApr 28
Researchers tested a new medicine called bemiltenase alfa that helps control bleeding in people with hemophilia A and B. These patients had developed resistance to standard treatments, making their bleeding harder to manage. Early trial results show this new medicine may help them control bleeding when it happens.
WHY IT MATTERSFor hemophilia patients who have developed inhibitors (antibodies that block standard treatments), bemiltenase alfa offers a potential new option for on-demand bleeding control when current therapies no longer work effectively.
Clinical trialRSSApr 24
A new treatment called Roctavian was given as a single injection to men with severe hemophilia A (a bleeding disorder). Seven years later, most patients had fewer bleeding episodes and needed less preventive medicine. This suggests the treatment's benefits can last for many years.
WHY IT MATTERSIf you have severe hemophilia A, Roctavian could mean switching from frequent infusions or injections to a single treatment that protects you from bleeds for years.
AdvocacyRSSApr 24
A person recently attended the Hemophilia Federation of America's annual symposium in New Orleans and shared their positive experience meeting others in the hemophilia community. The event inspired reflection on both current progress in treating hemophilia and the difficult history the community has faced. The author expressed gratitude for being included and highlighted the importance of gathering with others who understand the challenges of living with a bleeding disorder.
WHY IT MATTERSCommunity events like the HFA Symposium provide hemophilia patients and caregivers with opportunities to connect with others, learn about new treatments, and access support networks that can improve quality of life and treatment decisions.
NewsRSSApr 23
A father shares a personal story about visiting his 20-year-old son and balancing pride with concern about his health. The article appears to be a personal reflection from a parent in the hemophilia community, though the full content is not available in this excerpt.
WHY IT MATTERSParents of children with hemophilia often navigate complex emotions about their child's condition and independence — this personal account may help other families feel less alone in similar situations.
AdvocacyRSSApr 22
A mother shares her personal story about raising two sons with hemophilia, a bleeding disorder that prevents blood from clotting properly. She describes how the condition has affected her family's life and what it means to be a caregiver for young men living with this lifelong disease. The article uses her childhood memory of wanting to do gymnastics as a contrast to the physical limitations and challenges her sons face.
WHY IT MATTERSParents and caregivers of people with hemophilia can find community and validation in hearing directly from other families navigating the same daily challenges of managing a chronic bleeding disorder.
ResearchRSSApr 22
A new study shows that regular exercise — including activities like walking, strength training, and balance work — is safe and helpful for people with hemophilia of all ages. The research found that exercise can reduce chronic pain, improve how well people can move and function, and make life better overall. The key is that exercise programs need to be carefully designed for each person's needs.
WHY IT MATTERSPeople with hemophilia often avoid exercise due to bleeding concerns, but this study provides evidence that structured exercise can safely reduce pain and improve daily functioning without increasing bleeding risk.
NewsRSSApr 22
People with bleeding disorders like hemophilia face daily challenges that go beyond medical treatment. Getting dressed requires careful thought about activities planned for the day, since certain movements or pressure on the body can trigger bleeding. This personal essay shows how bleeding disorders affect everyday life decisions that most people never have to consider.
WHY IT MATTERSPeople with bleeding disorders need to plan physical activities carefully to avoid injuries that could cause internal bleeding, making even routine tasks like choosing clothes a strategic health decision.
AdvocacyRSSApr 22
This article is a personal essay from someone with hemophilia who reflects on how living with a rare disease has changed their perspective on judging others. The author uses examples from reality TV shows to discuss how society is quick to judge, but their experience with hemophilia has taught them to be more compassionate and understanding before making assumptions about people.
WHY IT MATTERSPeople with hemophilia often face misconceptions and judgment from others who don't understand their condition, so this perspective piece validates the emotional and social challenges that go beyond just managing the medical aspects of the disease.
AdvocacyRSSApr 22
A parent shares their experience helping their 7-year-old daughter with hemophilia participate in swimming lessons despite physical limitations. The article emphasizes that having a rare bleeding disorder doesn't prevent children from enjoying typical childhood activities and building confidence through sports and recreation.
WHY IT MATTERSParents of children with hemophilia can learn practical strategies for safely enabling their kids to participate in normal activities like swimming, which can improve physical health and emotional well-being.
NewsRSSApr 22
A parent shares a personal story about receiving a song recording from their son with hemophilia, reflecting on how their child's talents and abilities extend far beyond his medical condition. The article emphasizes that people living with rare diseases like hemophilia are whole individuals with gifts and passions that deserve recognition. This piece appears in Hemophilia News Today and focuses on the emotional and human side of living with a chronic blood disorder.
WHY IT MATTERSFor parents and caregivers of children with hemophilia, this story validates the importance of seeing their child as a complete person with abilities and dreams, not just defined by their bleeding disorder diagnosis.