3989 E 170 N
Rigby, ID 83442
Phone 208-344-4476

Newsroom

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


FOR IMMEDIATE RELEASE



STAQ Pharma, Inc. has advised National Hemophilia Foundation and the Hemophilia Alliance and the of a typographical printing error on a few units of lot 21114255A Desmopressin Acetate 1.5 mg/mL.

Many of us fail to follow through on creating a new habit that truly sticks. However, If you’re looking for a way to build a habit that lasts, there are some tried-and-true steps you can take to succeed!

FOR IMMEDIATE RELEASE

NHF STATEMENT IN RESPONSE TO 6/24 SUPREME COURT RULING




“The National Hemophilia Foundation (NHF) is aware of today’s Supreme Court decision around the reversal of Roe vs. Wade. NHF will continue to be a champion and stand firm in the fight for women’s health, health equity, and access to care for all.

Buying food from farmers and ranchers has so many great benefits. Consider stopping by your local farmers market to enjoy the many advantages it has to offer.

The Rady Children’s Institute for Genomic Medicine (RCIGM®) recently announced the initiation of a pilot program designed to advance a diagnostic and precision medicine guidance tool known as BeginNGS™.

Don’t wait until it’s too late to focus on your wellness. How you feel trickles into your everyday life, which is why it’s important for you to put your physical and mental health and wellbeing first.

The U.S. diabetes epidemic and its impact on the health of tens of millions of Americans has been thoroughly reported on in recent decades, particularly as it relates to the significant impact of body mass index (BMI) as a risk. Yet little is known of its prevalence in patients with hemophilia (PWH).

When times are hard, it’s important to move forward and do what you can for others. Above all, open yourself up to listen and try to better understand the situation from your friend or loved one’s perspective.

Bayer has announced that they are discontinuing the recombinant factor VIII product Kogenate® FS. First approved by the U.S. Food and Drug Administration in 1993, the therapy has carried multiple indications for children and adults with hemophilia A.

The U.S. Food and Drug Administration (FDA) has granted Breakthrough Therapy designation to efanesoctocog alfa (BIVV001) for the treatment of individuals with hemophilia A. Investigational breakthrough drugs are placed on a fast-track approval program and given intensive guidance from the FDA.

BioMarin recently announced that their planned timeline for the resubmission of a Biologics License Application to the U.S. Food and Drug Administration (FDA) for valoctocogene roxaparvovec, also known as Roctavian, has been pushed back to the end of September 2022 – the initial target had been June. 

June 3 is the birth date of the late physician and researcher, Dr. Charles Drew. Dr. Drew is remembered for his legacy in creating valuable techniques and processes in blood storage and blood transfusion that are still used today. He is also heralded for his efforts in health equity and racial justice in the care of African American and Black patients, and for promotion the training of Black and African American physicians.

June is the first official month of summer, which makes it the perfect opportunity to celebrate the great outdoors!

NHF wants to know what is working well, and what isn't! How can we better serve you as an organization and community leader?


In order to become your go-to trusted resource for information on bleeding and blood disorders, NHF is asking for your feedback! Take a short survey to share your thoughts.

Click here to take the survey!

The U.S. Food and Drug Administration (FDA) has accepted CSL Behring’s Biologics License Application (BLA) for priority review of etranacogene dezaparvovec, an investigational gene therapy for hemophilia B.

Etranacogene dezaparvovec, also known as CSL222, consists of adeno-associated virus serotype 5 (AAV5), which function as a delivery vector carrying a gene cassette with the Padua variant of factor IX (FIX). AAV5 is a variant of the type of the adeno-associated virus vectors (AAVs) investigated in multiple ongoing gene therapy clinical trials.

Memorial Day is an incredibly special time in America’s history. This weekend, do more than barbecue. Take time to truly commemorate the meaning of the holiday and celebrate the servicemen and women who have given everything to this country.

Summer is the perfect time to show your kids that giving back can be fun. Choose an organization that has a shared interest among your family and ask about volunteer opportunities.

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.

All work and no giving back makes for a dull workplace! Talk to your employer about already existing programs such as matching gifts or time off to volunteer.

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.

Use the power you have to make the world a brighter, better place, and you’re sure to also experience some of that kindness. Together, we have the power to change the world!

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.

 

In order to preserve our beautiful planet, it’s going to take work from everybody. Encourage your family and friends to join you so that we can preserve the place we call home!

Now is the perfect time to join a local or national organization as a mentor to help make a difference in the lives of kids around the world. Check out these top reasons you should become a mentor today.

Whether you’re just getting started or a seasoned volunteer advocate, read on for ways that you can celebrate Global Volunteer Month and inspire others to join in to make our world a better place.

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.

This April, celebrate Keep America Beautiful Month by working in your community to get up and clean up. There are lots of ways to beautify our world, and together we can keep it that way for generations to come.

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.

If you want to live a more altruistic lifestyle, start by reprogramming your brain to think more positively. Try out these six tips to focus your thoughts and train your brain to be more positive.

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

Spring is a time of renewal, and cleaning doesn’t have to simply mean scrubbing the floors! Try these cleaning activities to promote a happy and healthy lifestyle.

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.

Spring break is a time for rest and relaxation, but it has the potential to be so much more. Ask your kids about causes they’re passionate about and try to line those passions up with a local organization.

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.

Women have made massive and inspiring contributions to our communities and the world. Use Women’s History Month as a reminder to celebrate the women in your life who inspire you every day.

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

In the spirit of “going green” this month, use this holiday  as a reminder to focus on the world around us. Check out these ways you can give the month of March new meaning by going green!

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

3989 E 170 N
Rigby, ID 83442
Phone 208-344-4476

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