If you want to be in the know about what’s going on at our organization, you’ve come to the right place!
The National Bleeding Disorders Foundation (NBDF) is excited to announce a new online, enduring, and accredited educational activity available to healthcare providers. The intended audience are hematologists, emergency medicine physicians, nurses, nurse practitioners, physician assistants, pharmacists, and other members of the hemophilia care team in the United States
Not sure if donating blood is the right decision for you? Check out all the answers to your questions here, and help give life this January.
Our hearts are with everyone affected by the devastating wildfires sweeping through Greater Los Angeles. The National Bleeding Disorders Foundation (NBDF) is actively working with local chapter leaders to support our community during this crisis. We have compiled vital emergency resources, including chapter contacts, county services, transportation assistance, and shelter information. This resource list will be updated regularly as new information becomes available.
The U.S. Food and Drug Administration (FDA) has granted Fast Track designation to the investigational von Willebrand disease (VWD) therapy VGA039. The therapy is being developed by Star Therapeutics, a biotechnology company based in San Francisco, CA.
The National Bleeding Disorders Foundation (NBDF) is pleased to announce the appointment of three new distinguished members to its Board of Directors, effective January 1, 2025. Additionally, we are delighted to announce the re-election of Susan Hartmann for another term.
The National Bleeding Disorders Foundation (NBDF) is proud to announce its achievement of the prestigious Platinum Seal of Transparency from Candid (formerly known as Guidestar), placing NBDF among the top 0.1% of U.S.
The National Bleeding Disorders Foundation (NBDF) proudly announces that our former President and CEO, Dr. Leonard A. Valentino, has been appointed President of the World Federation of Hemophilia USA (WFH USA). This appointment represents an exciting expansion of Dr. Valentino's dedication to the bleeding disorders community, now on a global scale.
The National Bleeding Disorders Foundation (NBDF) proudly announces that our former President and CEO, Leonard A. Valentino, MD, has been appointed as President of WFH USA. This appointment represents an exciting expansion of Doctor Valentino's dedication to the bleeding disorders community, now on a global scale.
There are a variety of different ways to be more charitable without spending money. Here are some ideas to try.
If you want to be sure your New Year’s resolutions really stick for 2025, check out these useful tips on how to keep the habit hopeful.
In a significant advancement for von Willebrand Disease (VWD) research and treatment, an international team of experts, including patients, clinicians, and researchers, has developed the first-ever core outcome set (COS) for VWD clinical trials. The initiative, known as coreVWD, establishes standardized outcomes that should be measured in all clinical trials for both prophylaxis and perioperative VWD treatments.
The U.S. Food and Drug Administration (FDA) has approved Alhemo (concizumab-mtci) for routine prophylaxis to prevent or reduce the frequency of bleeding episodes in adult and pediatric patients 12 years of age and older with hemophilia A with factor VIII inhibitors or hemophilia B with factor IX inhibitors.
Check out this unique spin on 12 ways you can show you care this holiday season.
NBDF Mourns the Loss of Dr. Marion Koerper
The National Bleeding Disorders Foundation is proud to support an important research initiative led by Emily Agen, a genetic counseling graduate student at the University of Michigan, who is investigating our community's understanding of hemophilia gene therapy treatments.
This season, be a part of the merriment by giving back through these four fun festive ways to spread holiday cheer.
Atlanta, Georgia based Expression Therapeutics recently announced phase 1 clinical trial results based on ET3, the company’s investigational gene therapy. ET3 is developed with novel lentiviral vectors.
Atlanta-based Expression Therapeutics recently announced phase 1 clinical trial results based on ET3, the company’s investigational gene therapy. ET3 is developed with novel lentiviral vectors.
The HANDI team hopes everyone will soon be enjoying all the warmth of the holiday season! To close the year, December HANDI Highlights is dedicated to new and emerging novel technologies for the treatment of people with bleeding disorders.
Sanofi has announced positive results from their pivotal LUNA 3 study, a phase 3 clinical trial of rilzabrutinib, the company’s investigational oral therapy developed to treat persistent or chronic primary immune thrombocytopenia (ITP).
Star Therapeutics, a clinical stage biotechnology company headquartered in San Francisco, CA, recently announced new interim clinical trial data for their investigational von Willebrand disease therapy VGA039. The data comes from VIVID 2, a phase 1 single ascending dose study that is being conducted at multiple sites in the U.S. and abroad.
If you want to live a more altruistic lifestyle, help give back in the upcoming season by checking out these volunteering ideas for cold weather months.
A new study published in the journal Blood Advances describes a new initiative focused on traditionally underserved and underdiagnosed subgroup within the bleeding disorders community – hemophilia carriers/females with hemophilia.
Federal
2024 Election & What to Expect for the End of the Year
Beginning in 2025 with the 119th Congress and the January 20th Presidential Inauguration, Republicans will take control of the White House and the two chambers of Congress, the Senate flipping from Democratic control and the House remaining Republican. President-elect Trump has already begun shaping his second administration – an effort far more organized than after his first win.
A mentorship program has more in store than just for the mentee. If you’re not sure whether mentoring is right for you, take a look at these eight ways becoming a mentor can benefit you.
The World Federation of Hemophilia (WFH) is currently seeking feedback from users of the WFH Guidelines for the Management of Hemophilia. The survey includes nine questions focused primarily on users’ experience and preferences, with the goal of making the guidelines as accessible and user-friendly as possible.
The evidence-based, consensus-driven guidelines are developed by international panels of expert healthcare professionals (HCPs) and people with inherited bleeding disorders (IBDs)
What’s the best way to show thankfulness? By giving back to others. This Thanksgiving, remember the reason for the season by showing thanks through giving.
In keeping with the spirit of National Family Caregivers Month, November HANDI Highlights is dedicated to resources that help support the caregiving community.
This edition includes resources that speak to challenges universal to all caregivers as well as those unique to caring for individuals with bleeding disorders. Topics include school/daycare coordination, financial planning, caregiver burnout, advocacy, aging, and multi-generational caregiving,
Books are a valuable source of information, creativity and empathy. If you’re not a book lover now, you will be soon. Here’s how reading makes you a better person.
Individuals with severe von Willebrand disease (VWD), the most rare and severe form of the condition, can experience a wide range of bleeding symptoms ranging from relatively mild to serious.
This holiday season, try incorporating some of these healthy treats into your life to balance out the rich holiday feasts. Check out these top eight power foods you need to take advantage of.
Gratefulness is not something which comes naturally; it needs practice. If you want to live an altruistic life and practice thankfulness this month, check out these easy steps you can take.
The National Bleeding Disorders Foundation (NBDF) is pleased to announce that three new documents have been issued by the Medical and Scientific Advisory Council (MASAC).
MASAC create recommendations and advisories on treatment, research, and other general health concerns of the inheritable bleeding disorders community.
If you’re interested in living a more altruistic lifestyle and helping those in need this Halloween, check out these five spooky ways you can give back.
The National Bleeding Disorders Foundation (NBDF) is pleased to announce that Evan Schow of Bigfork, Montana was selected as the recipient of the 2024 Kevin Child Scholarship (KCS). The Child family selected Evan as this year’s KCS award recipient from among 30 applicants.
October HANDI Highlights is dedicated to an historically underserved group within the inherited bleeding disorders community - women, girls, and people with the propensity to menstruate (WGPPM). While awareness of these populations has increased in recent years, they continue to be underserved in terms of timely diagnosis and management.
Since the weather is cooling down, you can add a little sunshine and warmth to a stranger with these simple ideas.
On October 11, 2024, Pfizer announced that the U.S. FDA approved HYMPAVZI™ (marstacimab-hncq) for routine prophylaxis to prevent or reduce the frequency of bleeding episodes in adults and pediatric individuals 12 years of age and older with hemophilia A without factor VIII (FVIII) inhibitors, or hemophilia B without factor IX (FIX) inhibitors.
Let’s talk about five strategies to keep your resilience sharp, so you’re ready to handle any obstacle life throws your way.
A recent communication has been released regarding the memorial service for the late Neil Frick, a cherished colleague whose passing has deeply affected the National Bleeding Disorders Foundation (NBDF) and the bleeding disorders community.
Neil Frick’s memorial mass is scheduled for Friday, October 25, 2024, at 10:45 AM Eastern time. It will be held at St. Gregory The Great Church, located at 242-20 88th Avenue, Bellerose, New York 11426.
In the wake of Hurricanes Milton and Helene, we at the National Bleeding Disorders Foundation (NBDF) want to take a moment to let you know that we are thinking of you during this difficult time. Our hearts are with all those affected in Florida, Georgia, North Carolina, South Carolina, and Tennessee, where so many are facing overwhelming challenges—especially in accessing vital medical care.
The U.S. Food and Drug Administration (FDA) is holding a public webinar that will speak to the ways in which a strong support network can help mitigate some of the inherent challenges associated with clinical trial participation.
Finding Your Support Team While Participating in a Clinical Trial will feature a panel of patients, care partners, and advocates discussing:
Findings of a new preclinical study published online in Nature Communications may help address lingering questions relevant to the long-term durability of approved hemophilia A gene therapy. The research was led by Lindsey A. George, Director of Clinical in Vivo Gene Therapy and attending physician with the Division of Hematology at the Children’s Hospital of Philadelphia (CHOP).
Celebrating Excellence in the Bleeding Disorders Community
The Georgia World Congress Center in Atlanta buzzed with anticipation as the bleeding disorders community gathered for the pinnacle of the 2024 Bleeding Disorders Conference: The National Bleeding Disorders Foundation's (NBDF) Awards of Excellence ceremony. This night was more than just a distribution of accolades; it was a celebration of resilience, innovation, and unwavering commitment to improving lives.
Honoring a Lifetime of Achievement
Let's talk about five ways to spread joy and positivity everywhere you go, that you can practice every day!
The National Bleeding Disorders Foundation (NBDF) is proud to support International Plasma Awareness Week (IPAW), taking place October 7-11 this year. This annual event highlights the critical importance of plasma donation and plasma-derived medicines for our community.
Why It Matters: Plasma-derived therapies are essential for many individuals with bleeding disorders. IPAW helps educate the public about plasma donation and its life-saving impact.
How To Participate
