NEWS


If you want to be in the know about what’s going on at our organization, you’ve come to the right place!

Be sure to check back regularly to get our latest news updates.


The next generation of researchers are continuously inspiring and fueling NHF’s renewed focus on research. Dr. Olubusola (Bosula) Oluwole is one of the first-ever recipients of the new Jeanne Marie Lusher (JML) Diversity Fellowship.

NHF’s newest research fellowship program is named in honor of Dr. Jeanne Marie Lusher, a distinguished clinician and researcher whose career focused on inhibitor development in factor VIII patients.

Meet NHF's Education Specialist, Sonia Roger! As one of NHF's most tenured employees, Sonia is a vital part of the NHF community and loves giving back to families and patients. Learn more about her role at NHF!

Tell us a little bit about yourself and your role at NHF.

The issue of poor bone health represents a significant public health concern in the U.S. population, including for individuals with hemophilia who are at increased risk for low bone mineral density (BMD) and bone fractures.

Newly published data from a phase 3 clinical study suggests that the recombinant factor VIIa bypassing agent (BPA) eptacog beta was used to safely and effectively treat and control bleeding in children with hemophilia A or B with inhibitors, 12 years of age or younger.

NHF’s Medical and Scientific Advisory Council (MASAC) recently issued six new documents, all of which were adopted by NHF’s Board of Directors on April 27, 2022.

 

A group of investigators are embarking on a new research program designed to unpack some of the outstanding fundamental questions associated with current approaches to gene therapy for hemophilia A.

NHF Announces Spring Webinar Lineup

FOR IMMEDIATE RELEASE

Media Contact:

Ilana Ostrin
iostrin@hemophilia.org

212-328-3769

April 17, 2022

In advance of World Hemophilia Day this year (April 17), NHF sat down with historian Dr. Helen Rappaport to learn more about how hemophilia impacted the Romanov family, and its lasting impact on world history. Read the interview transcript, or watch the video recording.

The UK-based biotechnology company Freeline recently announced that the first U.S. patient has been dosed in its Phase 1/2 B-LIEVE dose-confirmation clinical trial of FLT180a for the treatment of hemophilia B. FLT180a is developed with the company’s proprietary adeno-associated viral (AAV) vector and its protein shell capsid, known as AAVS3, to deliver the genetic material that generates therapeutic factor IX levels in hemophilia B patients.

NHF sat down with NYLI member Patti W. to hear more about why she joined NYLI and what others should consider when filling out their application. Visit www.hemophilia.org/nyli">NYLI to learn more and fill out your own application.

NHF sat down with NYLI member Patti W.

Ahead of National Doctors Day (March 30), NHF CEO and hematologist

We are excited to announce that NHF’s Resource Center HANDI has launched a new microsite to coincide with Bleeding Disorders Awareness Month! The site includes many frequently asked questions (FAQs) received by HANDI.

Student Hajar Abuisef sat down with NHF to discuss her involvement in the Twitter account, Dr. Period Hackers. Read these Q&As, and watch the video to learn more!

How did you come to be a part of Dr. Period Hackers?

Dr. Bethany Samuelson Bannow sat down with NHF to discuss her co-authored Twitter account, Dr. Period Hackers. Read these Q&As and watch the video to learn more!

What inspired you to start Dr. Period Hackers?

Dr. Marybec Griffin graciously sat down with NHF for an informative dialogue to share information on her co-authored Twitter account, Dr. Period Hackers.

It’s almost that time of year!

Awareness month campaign encourages community to raise their voices and share what is most important and relevant to their conditions throughout March

Dr. Johnny Mahlangu gracious sat down with NHF's CEO Dr. Len Valentino for an informative dialogue to honor Black History Month and World Hemophilia Day. Read these Q&As and watch the video to learn more!

Black History Month and World Hemophilia Day Discussion with Dr. Johnny Mahlangu

As the eyes of the world fix upon Ukraine, I am shocked and saddened to see heartbreaking images emerge showing injured civilians staggering through the streets and towns in the east of the country following Russian bombing over the last several days. This is an unprecedented atrocity for which there is no justification. Russia’s decision to attack will bring catastrophic consequences to Ukraine. We stand in solidarity with the people of Ukraine and with every freedom-loving democracy in condemning Russia’s military actions.

In 2020 NHF began an exciting collaboration with a number of blood disorder groups who receive funding from the Centers of Disease Control and Prevention.

Please click this link to read an update from BioMarin on a phase 3 trial.

Takeda recently announced that the U.S. Food and Drug Administration (FDA) has approved VONVENDI® for routine prophylaxis to reduce the frequency of bleeding episodes in adults with severe Type 3 von Willebrand disease (VWD) receiving on-demand therapy. Type 3 VWD is the rarest and most severe form of the disease.

VONVENDI® is the only currently available recombinant von Willebrand factor therapy on the market.

Medscape has launched a new enduring activity designed to enhance clinicians’ awareness of gene therapy for hemophilia and increase their confidence when it comes to the eventual integration of these paradigm-shifting therapeutics into the clinical care of patients.



The program, which was developed through a partnership between Medscape and NHF, is intended for an international audience of hematologists/oncologists, pediatricians, hematology/oncology nurses, nurse practitioners, and physician assistants.

News

PO Box 147
Richwood, OH 43344

© Central Ohio Chapter of the National Hemophilia Foundation 2022

Crafted by Firespring