Hemophilia Insights

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

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Latest Research

In a study by Trappl et al. (2025), researchers explored the relationship between hemophilia and biological aging by examining biomarkers such as telomere length and mitochondrial DNA (mtDNA) copy number. They compared these markers in 99 persons with hemophilia (PwH) and 61 healthy controls. The findings revealed that PwH had significantly shorter telomeres and fewer mtDNA copies than the controls, suggesting accelerated biological aging in PwH. Specifically, telomere length was notably shorter in PwH (6.09 kb) compared to controls (10.07 kb), and mtDNA copy number was also reduced in PwH. The severity of hemophilia was associated with these biomarkers, indicating that more severe cases might experience faster biological aging.

The study utilized quantitative-PCR-based assays to measure these biomarkers and employed linear regression models to assess the association with hemophilia severity. The statistical significance of the differences in telomere length and mtDNA copy number between PwH and controls underscores the potential impact of hemophilia on the aging process. These findings could have implications for the management and treatment of hemophilia, considering the chronic nature of the disease and its effects on patients' quality of life.

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
BeCoMe-9: a Clinical Study of BE-101 for the Treatment of Adults with Moderately Severe or Severe Hemophilia B
Study Type
Phase II
Location
United States
Age Range
18+ Years
Enrollment
24
Haemophilia and Bone Loss - PHILEOS Study
Study Type
Interventional
Location
3 countries
Age Range
20 - 60 Years
Enrollment
480
Examination of Physiotherapists' Knowledge, Awareness and Competence on Physical Activity and Exercise in Hemophilia Patients
Study Type
Observational
Location
Turkey
Age Range
0 - Not specified
Enrollment
300

Community News

Hemophilia Federation of AmericaHemophilia Federation of AmericaMar 15, 2025

🎗️Today is Ultra-Rare Bleeding Disorder Awareness Day!

Did you know that ultra-rare factor deficiencies affect fewer than 200,000 people in the U.S.? These conditions occur when a person lacks or has insufficient clotting factors in their blood, making it harder for their body to stop bleeding. While ultra-rare, these factor deficiencies are a reality for many, impacting individuals in ways that are often hard to detect.

Some common symptoms to watch for include:

🩸 Heavy menstrual bleeding (menorrhagia)

🩸 Easy or unexplained bruising

🩸 Muscle and soft tissue bleeds

🩸 Frequent nosebleeds

🩸 Mouth bleeds

🩸 Bleeding after surgery or trauma

Ultra-rare factor deficiencies are inherited, and although only a few can be acquired later in life, they can make everyday life a little more challenging.

Here’s the list of ultra-rare factor deficiencies:

🔹 FId

🔹 FIId

🔹 FVd

🔹 FVIId

🔹 FXd

🔹 FXId

🔹 FXIII

Also, ultra-rare platelet deficiencies include:

🔸 Glanzmann’s Thrombasthenia

🔸 Platelet Disorders

The numbers may be small, but the impact is real. Are you one of the ultra-rare? Tell us in the comments. Let's continue to spread awareness and support those who live with these conditions! 💙

Don't forget to read our Bleeding Disorders Awareness Month Blog post for other ways to celebrate and spread awareness. https://hubs.li/Q03bVzYb0

Hemophilia Federation of America Post
Hemophilia of GeorgiaHemophilia of GeorgiaMar 17, 2025

Last week, Hemophilia of Georgia staff had a heartfelt and meaningful farewell sendoff party for Christi Humphrey, a dedicated Social Worker, who has been with HoG and served our community for 25 years. Everyone had a great time at the tea-themed party letting Christi know how much she is loved and will be missed. We wish Christi the very best in her future endeavors!

Hemophilia of Georgia Post
The Haemophilia Society UKThe Haemophilia Society UKMar 17, 2025

Huge congratulations to Jacob, his friends and mum, Nicola, on completing their swimathon this weekend - raising £430 in the process.

Jacob is one of our most dedicated young fundraisers and an inspiration to us all! You'll be able to read more about him in our upcoming issue of Community Matters which should be hitting your doorsteps in early April.

Well done Jacob and team :)

You can donate to Jacob's Just Giving here https://www.justgiving.com/page/nicola-green-1

Upcoming Events

APR
17
World Hemophilia Day Celebration Hemophilia Federation of America • Washington D.C., DC    Online
APR
23
Comprehensive Care Summit World Fed. of Hemophilia • Montreal, Canada    In Person
MAY
19
Iron Deficiency Webinar Hemophilia Federation of America • Washington D.C., DC    Online