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Boise, Idaho 83705

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


Have no fear, because spring is around the corner, and warmer months are ahead. In the meantime, take as many steps as you can to boost your mood and help others along the way. 

Use this as a reminder to commit acts of service to honor the legacy of Dr. Martin Luther King Jr. Even after the holiday passes, his spirit can carry on. Explore new ways you can give back to your community, involve your family and friends and set attainable goals for yourself.

BioMarin recently shared a community update on their Hemophilia A Clinical Development Program for valoctocogene roxaparvovec, the company’s investigational gene therapy.

This January, celebrate National Blood Donor Month by taking steps to go out, roll up your sleeve and give. Set the tone for the month and the rest of the year to live more altruistically.

If you’re ready for fun and flurries this winter season, check out some of these great winter wonderland adventures to try with your family.

WASHINGTON, D.C.— December 31, 2021 — In response to additional rulemaking for the Centers for Medicare & Medicaid Services’ (CMS)

FOR IMMEDIATE RELEASE

Media & Community Inquiries

Brett Spitale, VP of Advancement

Dec. 31, 2021 – New York, NY – NHF is deeply saddened to announce that former NHF CEO and community member, Val Bias, passed away suddenly on Thursday, Dec. 30.

Val and I first got to know one another 30 years ago, when we were opposing one another in an election for president of the National Hemophilia Foundation (US). I was fighting for HIV/AIDS advocacy from within, from the Board, and Val was part of a more activist group that was impatient the NHF wasn’t doing enough, fast enough. He and I came together, realized our goals were the same, and also recognized we were so much stronger together.

Results of a recently published study suggest that intense physical activities, particularly those that include a high collision-risk, can increase bleeding risk in individuals with severe or moderately severe hemophilia A. Investigators also found that increasing the time between the administration of factor (FVIII) and physical activity also heightened bleeding risk.

This new year, start off right by living more altruistically… for yourself. Establish new, healthy habits and goals to accomplish in 2022.


This time of the year is the perfect reminder to consider your altruistic and giving goals for 2022. Take a look below at some ways you can plan out your 2022 giving strategy, from fundraising to volunteering and random acts of kindness!

Sigilon Therapeutics recently announced a “strategic reprioritization,” as the company shifts focus to their non-hemophilia, investigational therapies, including those for MPS-1 and diabetes. This closely follows recent setbacks associated with their phase 1/2 clinical study of SIG-001 in individuals with severe or moderately severe hemophilia.

Interested in working in the hematology field, but don’t think that medical school is right for you? Consider an allied health field, like genetic counseling or physical therapy. Recently, NHF sat down with Mitch Starkman, a physical therapist, and Stefanie Dugan, a genetic counselor, to discuss their career paths and professional experiences. Read these Q&As and watch their respective videos to learn more! 

 

The onset of childbirth and the postpartum period are times when women with von Willebrand disease (VWD) are at an increased risk for excessive bleeding, exposing them to further, and in some instances, serious complications. While there exist therapies with VWD-specific indications, it is not uncommon for these patients to still experience excessive bleeding while receiving treatment. These scenarios are challenging as there is sparce clinical data and a subsequent lack of clear guidance on the optimal management of bleeding in these particular settings.

While the holidays are about spending time with others and spreading as much cheer as possible, it’s hard to spread cheer if you aren’t feeling great yourself.

uniQure and CSL Behring recently announced that etranacogene dezaparvovec, an investigational hemophilia B gene therapy currently in clinical trials, has achieved a primary endpoint of “non-inferiority” in annualized bleeding rate (ABR) 18-months post administration. The non-inferiority component of a clinical trial measures whether the investigational therapy is not worse/less efficacious than a currently available product. In this case, etranacogene dezaparvovec is being compared to baseline factor IX prophylactic replacement therapy as part of the phase III HOPE-B pivotal trial.

How will you help spread the word or give back during Universal Human Rights Month? From volunteering to helping advocate and spread awareness, there are so many ways to get involved.

PRESS RELEASE





FOR IMMEDIATE RELEASE

MEDIA CONTACT:

Sigilon Therapeutics today reported a new development in the company’s phase 1/2 clinical study of SIG-001 in individuals with severe or moderately severe hemophilia. This follows the events of this past summer when the U.S. Food and Drug Administration (FDA) placed a clinical hold on the trial due to an unwanted inhibitor response in one of the three patients participating in the study.

It's time to take part in the biggest giving day of the year! Celebrate GivingTuesday whether that be through giving your time, your gifts, talents or monetary contributions. Every gift, both big and small, helps make a difference. 

Historically, data on infants and toddlers (ITs) with von Willebrand disease (VWD), particularly relevant to bleeding patterns, has been lacking. To address this absence of data, a team of researchers from the U.S. Hemophilia Treatment Center Network (USHTCN) and the Centers for Disease Control and Prevention conducted retrospective analysis of HTC patients with VWD who are less than two years of age. The data were obtained through the USHTCN. The results were published in the journal Blood Advances.

No matter what holidays you celebrate, that means plenty more good times to be had before we ring in 2022. It also means it’s time to check in with your 2021 goals! From giving to volunteering to kicking a habit you hoped to leave behind, check out these tips to check in with yourself and finish out 2021 strong! 

Spark Therapeutics announced updated data from a phase 1/2 clinical trial of SPK-8011

For more than 40 years, the hemophilia treatment center (HTC), the U.S. HTC Network (USHTCN), and its model of integrated, patient-centered care has been essential in helping people with hemophilia (PWH) achieve optimal health outcomes.

Remember to take care of yourself this holiday season and give back when you can. The spirit of the holiday is all about spending time with the ones you love and giving back where you can! Help spread holiday cheer this year for yourself and others by following these ten steps!

Think about the heroes in your life, whether it’s somebody you know, people in your community or even those across the globe. There are also tons of organizations you could partner with this holiday season to show heroes that you care. Here are some ideas to get you started.

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NHF Statement In Response to New Michigan Law:

Media Contact:

Ilana Ostrin

212 328 3769


iostrin@hemophilia.org

The Indiana Hemophilia & Thrombosis Center and Partners in Bleeding Disorders Education Program have announced a new education program designed for physicians who practice at federally funded hemophilia treatment centers (HTCs) in the U.S. The Partners Physician Academy (PPA) will focus specifically on supporting and accelerating third-and-fourth year fellows and junior physicians for up to two years post-fellowship.

How will you lead with kindness? There are so many ways you can put your best foot forward in the world. Wake up each and every day asking yourself how you can spread kindness in the world.

November is often associated with a time of giving thanks, and this year is no different. In order to get the most out of the month, we’re deeming this as the year to start early. Make the entire month about showing gratitude to those you love, and even strangers.

The spooky season is coming to an end before we know it, but that doesn’t mean we’re over October. Scary doesn’t always have to be bad. Instead, use these final weeks as a reminder to do some scary-good deeds and give back to your community.

In order to lead a truly altruistic life, it’s important to take stock of your own mental health, as well as those around you. There are a ton of free resources and tactics you can use to check-in and improve your mental clarity.

It’s hard to believe that another month has come and gone. As we enter October and inch closer to the holiday season, year-end giving and volunteering also ramps up.

Promoting diversity, equity and inclusion in all that we do helps us develop a more informed and inclusive picture for different causes and issues at hand.

International Day of Peace, recognized on September 21 every year, is the perfect opportunity to promote peace in the world around us.

Spending quality time with those you love is not only good for the soul, it’s a great step toward living an altruistic life. But how do you put the quality in quality time? Check out these ways to make the most of quality time to help you on your journey toward an altruistic lifestyle. 

It’s hard to believe that the end of the year is approaching so quickly. Wasn’t it just 2020, after all? Time flies faster than you think, which is why it’s important to think about your end-of-year giving plan now. 

Life has been hard lately on us all, but September is National Self-Care Awareness Month. It’s a month dedicated to checking in with yourself, being kind to your inner monologue and truly making sure you get what you need to fill up your cup.

Although there are a ton of heavy issues going on in the world today, nonprofit organizations are a bright spot in the world, helping to provide relief and aid to a variety of important causes.

When you open yourself up to actively listening, you’ll be surprised at how much you gain in return. Check out these tips to implement active listening into your lifestyle, as well as what you can take away in return!

August 14 is recognized as Financial Awareness Day. You can celebrate by planning your own future, teaching others to plan for theirs or giving back to your community.

When it comes to our world, it’s always a good time to check in with how we can love it back for providing us with a home all these years.

Friday, July 30 is considered International Day of Friendship. Celebrate with these ways you can show the people you love the most just how much they mean to you.

While normally “back to school” is reserved for children, it turns out that this time of year is important for every age. That’s because you’re never too old to continue learning, and it can help you live up to your true potential in everyday life.

Just because it’s the middle of the year doesn’t mean it’s too late to set and achieve big things yet this year. While reevaluating your existing goals, throw in some hard-to-reach newer goals and set your sights high.

NHF is very pleased to announce that the Kevin Child Scholarship (KCS) application deadline has been set for August 2, 2021! The scholarship is named in tribute to Kevin Child, who died of AIDS in 1989, shortly before graduating from college. It is awarded annually to a student with hemophilia who is about to enter or currently enrolled in a program of higher education.  

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