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

News from NBDF

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


A new paper published in The Lancet Haematology journal includes data from the HOPE-B clinical trial program that is investigating the hemophilia B gene therapy etranacogene dezaparvovec – the product’s commercial name is Hemgenix® (CSL Behring).

 

Meditation is powerful. If you’re unsure whether or not the practice is worth looking into, check out these top ways meditation can help improve your life.

Keeping Your Informed 

The HANDI Resources Center Team is pleased to announce new 2024 scholarship opportunities available for the bleeding disorders community!

Government Relations Update – March 2024

Federal: NBDF’s 2024 Washington Days was held March 6-8.  NBDF is grateful to the more than 400 volunteer advocates from forty-four states who participated in the 231 meetings with Members of Congress and the state advocacy training.  This year’s priority issues are the HELP Copays Act (HR 830/S 1375), appropriations for NIH and CDC programs, and federal action addressing commercial health plans’ narrow prescription drug formularies and exclusions.

State

Turns out, regular writing and keeping a journal actually has a lot of surprising mental and emotional health benefits. Today, we’re going to check them out.

NBDF recently learned that Novo Nordisk now has 3,000 IU vial size of Rebinyn® back in stock. Rebinyn is the company's recombinant factor IX extended half-life therapy for the treatment of hemophilia B. It is indicated for the on-demand treatment and control of bleeding episodes and the management of bleeding around surgery. It is also indicated for routine prophylaxis to reduce the frequency of bleeding episodes.

The U.S. Food and Drug Administration (FDA) has approved a supplemental Biologics License Application for IXINITY® (Medexus), a recombinant factor replacement therapy to treat patients with hemophilia B. 

The new approval expands the product indication to include the on-demand, prophylactic, and perioperative treatment of children under 12 years of age. The previous indication was limited to adults and older children more than 12 years of age.

For Immediate Release 

CONTACT:  

Carrie Strehlau and Kyla Clark 

National Bleeding Disorders Foundation 

212-382-3773 

kclark@hemophilia.org%C2%A0" title="Email for Kyla Clark">kclark@hemophilia.org 

 

National Bleeding Disorders Foundation Celebrates Five Years of Community Voices in Research 

NBDF is pleased to announce HANDI Highlights, which is designed to connect the bleeding disorders community with timely, practical, and readily-accessible resources.

Despite their age, children can have a powerful impact in the community, if only we encourage them to do so. Here are four reasons kids should start volunteering young.

Takeda recently announced positive results from a phase 2 clinical trial of their investigational therapy (Mezagitamab), to treat patients with persistent or chronic primary immune thrombocytopenia (ITP). The therapy is developed with laboratory engineered monoclonal antibodies, which are cloned versions of human antibodies produced by the body’s immune system.

The National Bleeding Disorders Foundation (NBDF) marked its 75th Anniversary in 2023 by recognizing the contribution of various community stakeholders. As part of this campaign, a video was created to celebrate the pivotal role of nursing in comprehensive care for bleeding disorder patients. The video features interviews with experienced nurses who for decades have cared for patients at hemophilia treatment centers throughout the U.S. 

Gardening not only brings in beautiful colors, scents and foods to your home, but it has added benefits just for you. Here are some reasons you should plant a garden this season.

The Partners Physician Academy (PPA) is offering a new training course for early career physicians practicing in hematology and specializing in bleeding disorders care.

The training will cover the key conditions that physicians treat and manage when working within the hemophilia treatment center network, such as hemophilia, von Willebrand disease (VWD), and rare bleeding disorders.

By going green, we create a better environment for ourselves and future generations. Check out these easy ways you can live an altruistic—and green—lifestyle.

Happy Bleeding Disorders Awareness Month! In keeping with the spirit of the month, NBDF’s HANDI Resource Center is pleased to announce the availability of a new Hemophilia Fact Sheet. This two-page PDF document was created to fill the need for a current, accessible resource containing basic information about hemophilia.

This Women’s History Month, get involved by showing support for the women in your community. Check out these ways you can remember powerful women from history, while advocating for women today.

Government Relations Update – February 2024 

A new study published in the journal Blood Coagulation & Fibrinolysis, looked at the impact of hereditary factor X deficiency (HFXD) on patients and caregivers in the United States. HFXD is an ultra-rare bleeding disorder that occurs in approximately 1 in 500,000 to 1 in a million people globally.

We are pleased to announce that the Emergency Care for Patients with von Willebrand Disease treatment manual is now available in a Spanish language version. Funding for the translation, Cuidado de Emergencia a Pacientes con Enfermedad de von Willebrand, was provided by Akron Children’s Hospital.

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NBDF employees are talented, dynamic, and passionate individuals dedicated to supporting the inheritable blood and bleeding disorders community. They value diversity, accountability, service, respect, and support.

Phil Gattone, M.Ed., NBDF President and CEO 

When it comes to supporting local business, there’s more to it than helping the community; it supports you too. Check out these reasons why going local helps you out in the long run.

There are ways we can challenge ourselves to grow in empathy. If you want to learn more, check out these tips for how to cultivate more empathy for others.

What if you could live with more compassion this week and share love with other people in your community, country or even the world? Turns out, you can!

Federal:

The U.S. Food and Drug Administration (FDA) has approved Fabhalta® (iptacopan), the first oral therapy for the treatment of adults with a rare blood disorder known as paroxysmal nocturnal hemoglobinuria (PNH). It is manufactured by Novartis.

PNH is an acquired (not inherited) condition that causes the immune system to attack and prematurely breakdown red blood cells and platelets. Left untreated, the condition can become serious and even be life threatening. While it can occur at any age, it is most often diagnosed in young adults.

Give yourself and your loved ones the greatest gift this American Heart Month by focusing on making heart-healthy decisions towards a happier and healthier lifestyle.

Novo Nordisk recently informed NBDF that they are experiencing a temporary shortage of their product Rebinyn®, specifically in the 3,000 IU vial size. Rebinyn is a recombinant factor IX extended half-life therapy for the treatment of hemophilia B.

It is indicated for the on-demand treatment and control of bleeding episodes and the management of bleeding around surgery. It is also indicated for routine prophylaxis to reduce the frequency of bleeding episodes.

For Immediate Release

CONTACT:

Carrie L. Strehlau

National Bleeding Disorders Foundation

cstrehlau@hemophilia.org

901-230-4665

National Bleeding Disorders Foundation Names Phil Gattone, M.Ed., Next Chief Executive Officer

Gattone brings decades of experience in nonprofit community engagement, fundraising, strategy

Celebrate Black History Month with NBDF! 

This year we will share stories from the Black community within the bleeding disorders community. These individuals are truly an inspiration to the entire inheritable blood and bleeding disorders community. We hope that you take the time to read their stores and that their courage is an inspiration to you! 

In recent years, the arrival of novel hemophilia treatments that are effective and less burdensome to administer have opened up new possibilities for the consumers of these therapies. This begs the question – How might this evolving landscape be impacting treatment preferences for people with hemophilia? 

It can sometimes be difficult to consider how exactly to recognize Black History Month. What can you do? Here are six ideas for honoring Black History Month.

Takeda announced today that it is conducting a voluntary market withdrawal for two product lots of 650 IU VONVENDI® [von Willebrand factor] in the U.S. Takeda said that the withdrawal is being conducted out of an abundance of caution due to misprinted product labels with the incorrect expiration date.

The expiration date printed on the label on the outside of the package of the affected lots is six months after the actual expiration date (January 27, 2025).

Self-defeating thoughts can come when we least expect them and tear down our self-esteem and break our spirits. So how can we stand up to them and choose joy instead? Check out these 5 ways!

The art of meeting new people, and establishing new relationships, is a genuine skill. And, you don’t even have to be a social butterfly to master it!

Fortunately, recent studies have shown that volunteering with people (or a cause you care about) can actually mitigate depression and anxiety issues.

Positivity is key to creating an altruistic lifestyle in the New Year. If you want to start 2024 off on a high note, check out these tips for living a positive life this year.

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.

We’ve compiled a list just for you on last minute gift ideas that give back. Try some of these out to celebrate the holidays more altruistically this year.

Do you want more opportunities to give to your community? We’ve compiled a list of holiday fundraiser ideas to get involved in yourself or with other altruistic causes.

As we dive into the season of giving this month, let’s explore how the very action of giving can lead to a more altruistic life, improve our mood and even makes us happy.

Singing with others has numerous health benefits for your body and mind. Here are a few ways to be healthier and happier with music in your life.

Gratitude is about more than taking a second to say “Thanks.” Gratitude shows true appreciation. This Thanksgiving, we have some ideas for how you can give gratitude.

On November 25th, support your local businesses and discover hidden gems in your town.

This month looks at the world through the eyes of a child, so today we look at how you can recognize National Child Safety and Protection Month, and keep the children in your life safe.

If you strive to live an altruistic lifestyle, there are lots of ways to help out this Halloween. Here are some top tricks to make Halloween a treat for everyone.

Make October about more than just pumpkin spice lattes and costumes. Check out some of these ideas on how you can give back this month.

If you’re looking to celebrate this multicolor season in style with your family, check out these fun fall adventures you need to go on this year.

Dogs are the best, and this month you can celebrate them even more, because October is National Adopt a Shelter Dog Month!

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

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