If you want to be in the know about what’s going on at our organization, you’ve come to the right place!
If you want to live a more altruistic life, but aren’t sure where to start, then you’ve come to the right place. Here’s how to find a cause you care about.
The topic of bone health in people with bleeding disorders has received more attention and study in recent years, with reports suggesting that people with hemophilia (PwH) and people with von Willebrand disease (PwVWD) experience higher rates of osteoporosis and bone fractures. That said, screening for bone health is not consistent across federally funded hemophilia treatment centers. A lack of clear, uniform screening guidelines is a major contributing factor to this disparity.
For Immediate Release
PRESS CONTACT:
Kyla Clark
National Bleeding Disorders Foundation
347-920-0047
Turns out, helping others can actually help you live longer. You heard that right: the key to a long and fruitful life might exist in what you give, not in what you get.
The Neil Frick Resources Center (NFRC) is excited to announce new 2025 scholarship opportunities available to the bleeding disorders community.
The Neil Frick Resources Center (NFRC) is excited to announce new 2025 scholarship opportunities available to the bleeding disorders community.
Welcome to the Resource Round Up (formerly HANDI Highlights), a periodic communication of the Neil Frick Resource Center (NFRC), designed to connect the bleeding disorders community with practical and readily accessible resources.
Takeda Pharmaceuticals announced today it will globally discontinue two of its hemophilia treatments: HEMOFIL® M [Antihemophilic Factor (Human), Method M, Monoclonal Purified] and RECOMBINATE® [Antihemophilic Factor (Recombinant)]. General information is available at HemophiliaJourney.com.
Stephanie Lapidow, Executive Director of the Hemophilia Association of New Jersey (HANJ), is leading the charge to protect patients from predatory insurance practices through critical state legislation (S-3818/A-5217). In a powerful op-ed published by New Jersey Spotlight, Lapidow exposes how copay accumulator adjuster programs are leaving patients with chronic illnesses and rare disorders drowning in medical debt. These programs prevent copay assistance from counting toward out-of-pocket costs, forcing patients to pay thousands they can’t afford—while insurers double-dip.
How can you enjoy the new sunshine of the season? Here are some ideas for how to live your best altruistic life and celebrate sunshine on the first day of spring.
National Plant a Flower Day is the perfect start to the new season, so if you want to get involved, there are a few ways to join. Here’s how you can give back today.
State:
Arizona: HB 2380, a bill creating a Rare Disease Advisory Council, passed the House 46-12 on Feb. 26.
Iowa: Bleeding Disorders of the Heartland hosted its Advocacy Day at the state capitol Feb. 5, the same day as House and Senate subcommittees were holding hearings on companion PBM reform bills HSB 99 and SSB 1074 that include accumulator adjuster bans. BDotH and NBDF testified at both hearings in support of the measures.
Hemab Therapeutics recently announced that the first patient has been dosed in their phase 1/2 clinical trial of HMB-002, an investigational subcutaneous therapy for patients with von Willebrand disease (VWD). It is developed with a monovalent antibody to increase levels of both von Willebrand factor and factor VIII. HMB-002 is a prophylactic therapy to prevent bleeding in people will all types of VWD.
Today we dive into the history behind this month and how you can get involved, give back and build a better world by celebrating National Women’s History Month.
For Immediate Release
PRESS CONTACT:
Kyla Clark
National Bleeding Disorders Foundation
347-920-0047
kclark@hemophilia.org%C2%A0" title="Email for Kyla Clark">kclark@bleeding.org
FOR IMMEDIATE RELEASE
Pfizer, Inc. has announced that they are ceasing global development and commercialization of Beqvez™, the company’s hemophilia B gene therapy product.
MEDICAL ADVISORY
Released: February 24, 2025, 7:56 PM EST
Medical Advisory: ALTUVIIIO LOT #EY0330
For Immediate Release
PRESS CONTACT:
Kyla Clark
National Bleeding Disorders Foundation
347-920-0047
kclark@hemophilia.org%C2%A0" title="Email for Kyla Clark">kclark@bleeding.org
Did you know you can also give by supporting small businesses? Here are some hows, whys and benefits of supporting small businesses for your altruistic lifestyle.
NBDF is delighted to dedicate this edition of HANDI Highlights* to the upcoming Rare Disease Day® (RDD), which is observed every year on February 28th (or 29th in leap years) all around the world.
? Tune In! NBDF's Bill Robie Talks HB 1216 & Rx Costs
Today, we're sharing a powerful letter from Emily Ouellette, Executive Director of the Bleeding Disorders Alliance of North Dakota (BDAND), featured on February 18, 2025, in the Minot Daily News.
Even if you care about a cause, how can you ensure you’re a good fit for the position? Here are some ideas to help you find the right fit for volunteering.
Valentine’s Day can be more than just romantic love, but true, kind, caring love for your neighbors and those in need. How can you lead a more altruistic life this week?
Black History Month is a time to remember, celebrate and commemorate the achievements and contributions by African-American men and women throughout U.S. history.
The U.S. Food and Drug Administration (FDA) recently approved Journavx™ (suzetrigine) 50 milligram oral tablets, a first-in-class non-opioid analgesic developed to treat moderate to severe acute pain in adults. It works by targeting a pain-signaling pathway involving sodium channels in the peripheral nervous system, before pain signals reach the brain. The drug is manufactured by Vertex Pharmaceuticals Inc, which has its North American headquarters in Boston, Massachusetts.
NBDF wants to reaffirm our unwavering commitment to our entire bleeding disorders community. Our mission—enabling every person and family affected by bleeding disorders to thrive—remains unchanged. We stand resolute in our dedication to strengthening equitable healthcare access across our diverse nation, ensuring no one faces their bleeding disorder journey alone.
It’s true: with a lack of Vitamin D and little time spent outdoors, the winter months can literally make you sad. Luckily, we have some ways to combat seasonal depression.
How can we as individuals commemorate Dr. King’s life, and further continue his legacy? Here are some ideas to get started and celebrate Martin Luther King Jr. Day.
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.
