Hemophilia Insights

This week's must-know community updates, latest research & events

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Top Stories

Children with Hemophilia Have Reduced Balance
Children with hemophilia have poorer balance, increasing their risk of falls, but this doesn't seem to affect their quality of life. Improved balance could be a focus for rehabilitation programs.
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Managing Hemophilia with Inhibitors
Living with hemophilia inhibitors can lead to more frequent and severe bleeding episodes, affecting daily life and requiring unique treatment approaches. Each person's experience with inhibitors varies significantly.
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Bleeding Disorders Awareness Month Features Education and Advocacy
During March, organizations like the National Bleeding Disorders Foundation work to educate the public about conditions such as hemophilia, while advocating for support and resources for affected families. This effort aims to amplify the voices of those impacted by these disorders.
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Latest Research

In a study by Hasan & Motwani (2025), the use of emicizumab, a medication for hemophilia A, was evaluated over a five-year period at a single center. The research focused on children with severe hemophilia A, both with and without inhibitors to factor VIII, a protein essential for blood clotting. The findings indicated that emicizumab is effective in promoting blood clotting and reducing bleeding episodes in these patients. The study provided valuable long-term data on the safety and efficacy of emicizumab, complementing previous clinical trials and real-world analyses.

While the study reinforced the positive impact of emicizumab on patient outcomes, it also highlighted the need for ongoing monitoring and research to fully understand the long-term implications of its use in children with hemophilia A. The research by Hasan and Motwani contributes to the growing body of evidence supporting emicizumab as a prophylactic treatment option for this patient population.

Community News

Hemophilia Federation of AmericaHemophilia Federation of AmericaFeb 28, 2025

Today is Rare Disease Day. Let's take a moment to raise awareness about Hemophilia, a rare bleeding disorder that affects over 30,000 people in the U.S.

Hemophilia B, in particular, is quite rare. Out of the 30,000 Americans with hemophilia, only about 7,000 have Hemophilia B.

Common symptoms include: 🩸 Bleeding into muscles and joints (pain & swelling) 🩸 Nosebleeds 🩸 Prolonged bleeding from cuts, dental work, or surgery 🩸 Easy bruising 🩸 Blood in urine or stool 🩸 Gastrointestinal & urinary tract bleeding 🩸 Unexplained bleeding 🩸 Large bruises/hematomas 🩸 Heavy menstrual bleeding (Menorrhagia)

If you or a family member experience any of these symptoms and haven't been diagnosed, it's important to reach out to your healthcare provider for testing and a referral to a hematologist or Hemophilia Treatment Center (HTC). Early diagnosis can make all the difference. 💙 #RareDiseaseDay#Hemophilia

Hemophilia Federation of America Post
Hope for HemophiliaHope for HemophiliaFeb 26, 2025

Rare disease Day! February 28th

What a way to represent the rare disease community!

Hope for Hemophilia Post
Hemophilia of GeorgiaHemophilia of GeorgiaFeb 28, 2025

February 28th is #RareDiseaseDay, an international day to raise awareness about the treatment and care for the more than 7,000 rare disorders that affect people in the U.S. #Hemophilia and #vonWillebrandDisease are two of the #bleedingdisorders that are focused on and recognized on this important day. As we head into #BleedingDisordersAwarenessMonth in March, this is a great time to learn more about how Hemophilia of Georgia's programs and comprehensive care services are helping to improve the lives of individuals living with a bleeding disorder: https://www.hog.org/programs/

Hemophilia of Georgia Post

Upcoming Events

MAR
07
Trivia Challenge for Awareness Hemophilia Federation of America • Washington D.C., DC    Online
MAR
13
Topgolf Fundraising Event Hemophilia of Georgia • Atlanta, GA    In Person
APR
23
Comprehensive Care Summit World Federation of Hemophilia • Montreal    In Person
JUN
07
Camp Counselor Volunteer Opportunity Hemophilia of Georgia • Atlanta, GA    In Person

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