NBDF - for all blood and bleeding disorders https://www.hemophilia.org/ en Rebinyn Supplies Restored in 3,000 IU Vial Size https://www.hemophilia.org/news/rebinyn-supplies-restored-in-3000-iu-vial-size <p>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.</p> Wed, 27 Mar 2024 15:40:28 -0400 jangarola https://www.hemophilia.org/6878 Hemophilia B Therapy FDA Approved for Expanded Indication https://www.hemophilia.org/news/hemophilia-b-therapy-fda-approved-for-expanded-indication <p>The U.S. Food and Drug Administration (FDA) has <a href="https://www.fda.gov/media/177248/download?attachment"><span>approved a supplemental Biologics License Application for IXINITY®</span></a> (Medexus), a recombinant factor replacement therapy to treat patients with hemophilia B.&nbsp;</p> <p>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.</p> Tue, 26 Mar 2024 12:58:38 -0400 jangarola https://www.hemophilia.org/6876 NBDF Celebrates Five Years of Community Voices in Research https://www.hemophilia.org/news/nbdf-celebrates-five-years-of-community-voices-in-research <p>For Immediate Release&nbsp;<br> CONTACT: &nbsp;<br> Carrie Strehlau and Kyla Clark&nbsp;<br> National Bleeding Disorders Foundation&nbsp;<br> 212-382-3773&nbsp;<br> <strong><a href="kclark@hemophilia.org&nbsp;" title="Email for Kyla Clark">kclark@hemophilia.org&nbsp;</a></strong></p> <p>&nbsp;</p> <p class="text-align-center"><strong>National Bleeding Disorders Foundation Celebrates Five Years of Community Voices in Research&nbsp;</strong></p> Tue, 26 Mar 2024 12:33:28 -0400 kclark https://www.hemophilia.org/6875 March HANDI Highlights Now Available! https://www.hemophilia.org/news/march-handi-highlights-now-available <p>NBDF is pleased to announce <span><em>HANDI Highlights</em></span>, which is designed to connect the bleeding disorders community with timely, practical, and readily-accessible resources.</p> Mon, 25 Mar 2024 16:35:06 -0400 jangarola https://www.hemophilia.org/6873 Takeda Announces Interim Trial Results for Investigational ITP Therapy https://www.hemophilia.org/news/takeda-announces-interim-trial-results-for-investigational-itp-therapy <p>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.</p> Thu, 21 Mar 2024 13:39:03 -0400 jangarola https://www.hemophilia.org/6871 Video Celebrates Nurses in Bleeding Disorders Care https://www.hemophilia.org/news/video-celebrates-nurses-in-bleeding-disorders-care <p>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.&nbsp;</p> Tue, 19 Mar 2024 13:03:37 -0400 jangarola https://www.hemophilia.org/6859 New Training Available to Early Career Hematologists https://www.hemophilia.org/news/new-training-available-to-early-career-hematologists <p>The Partners Physician Academy (PPA) is offering a new training course for early career physicians practicing in hematology and specializing in bleeding disorders care.</p> <p>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.</p> Thu, 14 Mar 2024 14:44:30 -0400 jangarola https://www.hemophilia.org/6857 New Hemophilia Fact Sheet Now Available https://www.hemophilia.org/news/new-hemophilia-fact-sheet-now-available <p>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 <strong><a href="https://www.hemophilia.org/sites/default/files/document/files/Hemophilia-Fact-Sheet.pdf" rel="noopener noreferrer" target="_blank"><span><em>Hemophilia Fact Sheet</em></span></a></strong>. This two-page PDF document was created to fill the need for a current, accessible resource containing basic information about hemophilia.</p> Wed, 06 Mar 2024 13:30:26 -0500 jangarola https://www.hemophilia.org/6853 Government Relations Update - February 2024 https://www.hemophilia.org/news/government-relations-update-february-2024 <p paraeid="{944d4361-dc14-4d94-9d71-28aa62b1fbcb}{167}" paraid="2038075417"><strong>Government Relations Update – February 2024&nbsp;</strong></p> Mon, 04 Mar 2024 23:13:31 -0500 brobie https://www.hemophilia.org/6852 Researchers Look at Impact of Factor X Deficiency on Patients/Caregivers https://www.hemophilia.org/news/researchers-look-at-impact-of-factor-x-deficiency-on-patientscaregivers <p>A new study published in the journal <span><em>Blood Coagulation &amp; Fibrinolysis</em></span>, 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.</p> Wed, 28 Feb 2024 17:59:28 -0500 jangarola https://www.hemophilia.org/6848