Hemophilia Insights

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

New This Week

Exciting news! There is now a new section featuring clinical trials that are actively recruiting patients. This highly requested addition gives you direct access to cutting-edge research opportunities that could shape the future of treatment.

Stay informed about potentially life-changing studies and let us know what you think by replying to this email!

Top Stories

Latest Research

In a study by Ersal et al. (2025), researchers found that a significant number of hemophilia patients had low bone mineral density (BMD). The study involved 62 male patients, with a majority having severe hemophilia and being on factor prophylaxis. They discovered that 62.9% of the participants had lower than normal BMD, and 75% had a deficiency in vitamin D3. Notably, the parathyroid hormone (PTH)/calcium (Ca) ratio was identified as an independent risk factor for BMD, with a suggested optimal cut-off value of 6.57 for predicting low BMD.

The findings indicate that the PTH/Ca ratio could serve as a cost-effective and practical marker for assessing bone health in hemophilia patients. The study emphasizes the importance of routine screening for BMD and early intervention to prevent complications associated with low BMD in this population. Ersal et al. suggest that patients with a PTH/Ca ratio above 6.57 are approximately seven times more likely to have low BMD.

Clinical Trials

This is a list of upcoming or ongoing clinical trials that are actively recruiting and have been listed or updated in the last two weeks:
A Study of Safety, Tolerability, Pharmacokinetics, and Pharmacodynamics of SR604 in Two Participants Groups (Part A: Healthy Participants, and Part B: Participants with Hemophilia a or Hemophilia B)
Study Type
Phase I
Location
United States
Age Range
18 - 60 Years
Enrollment
36
SEVENFACT® for Bleeding Events in Hemophilia With Inhibitors
Study Type
Phase IV
Location
United States
Age Range
12 - 100 Years
Enrollment
55
An Observational Study Called JOIHA to Learn More About How Well the Treatment With Jivi Works to Prevent Problems With Joints in Adults With Hemophilia A.
Study Type
Observational
Location
Italy
Age Range
18+ Years
Enrollment
33
Pharmacokinetics, Pharmacodynamics, and Safety Profile of Understudied Drugs Administered to Children Per Standard of Care (POPS)
Study Type
Observational
Location
2 countries
Age Range
0 - 20 Years
Enrollment
5000

Community News

Hemophilia Federation of AmericaHemophilia Federation of AmericaMar 07, 2025

🎉 Bleeding Disorders Trivia Time! 🎉

We're kicking off a fun new trivia series to raise awareness for bleeding disorders, and we want YOU to get involved! 💡

Each week, we’ll pick 2 winners across all of our socials to win a t-shirt of your choice from our Limited Edition Bleeding Disorders Awareness Collection. These t-shirts are available ONLY until the end of the month, with proceeds benefiting our Helping Hands program, which helps those in the bleeding disorders community with financial support. Even better – proceeds will be generously matched by the Alliance Pharmacy! 🙌 https://hubs.li/Q039PMsc0

🎯 How to Enter:

Comment below with your answer to today’s question. We’ll pick two winners at random across all of our socials by the end of the day and notify them. Only US residents, please. 📩

If you see someone trying to post as HFA in the comments saying you won, please report and don't click on links. We will not be replying to winners until later today. Thank you and sorry for the spam.

👇 Here’s today’s trivia question: Who created the first US comprehensive care center for the treatment of bleeding disorders in 1959? This person’s efforts helped create hemophilia treatment centers (HTCs) throughout the country. 💉

Hint: The answer can be found somewhere on our website!

Let's have some fun, raise awareness, and make a difference in the lives of those affected by bleeding disorders! 💙

Hemophilia Federation of America Post
World Federation of HemophiliaWorld Federation of HemophiliaMar 10, 2025

🌍 Meet Anupama from India, a member of the WFH Women and girls with inherited #BleedingDisorders committee. Diagnosed with mild factor VIII deficiency in her 30s, she highlights the need for awareness, diagnosis, and equitable treatment for women and girls worldwide. This #WorldHemophiliaDay, let’s raise awareness and advocate together! https://bit.ly/3up6exA#WHD2025 DrAnupama Pattiyeri

Hope for HemophiliaHope for HemophiliaMar 10, 2025

March is Bleeding Disorders Awareness Month: a time to shine a light on the thousands affected by these conditions and advocate through education and awareness.

🩸 Swipe through to learn some fun facts and help spread the word!

Hope for Hemophilia Post

Upcoming Events

APR
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Trot to Clot fundraiser Hemophilia of Georgia • Atlanta, GA    In Person

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