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

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.

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. 

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 

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.  

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.