National Hemophilia Foundation - for all bleeding disorders https://www.hemophilia.org/ en Meet Dr. Bosula Oluwole: Dedicated to Finding a Cure for Sickle Cell Disease https://www.hemophilia.org/news/meet-dr-bosula-oluwole-dedicated-to-finding-a-cure-for-sickle-cell-disease <p><span><em><strong>The next generation of researchers are continuously inspiring and fueling NHF’s renewed focus on research. Dr. Olubusola (Bosula) Oluwole is one of the first-ever recipients of the new <a href="https://www.hemophilia.org/research/fund-your-research/jeanne-marie-lusher-diversity-fellowship" rel=" noopener" target="_blank" title="JML Fellowship">Jeanne Marie Lusher (JML) Diversity Fellowship. </a></strong></em></span></p> Mon, 16 May 2022 15:18:09 -0400 amurtha https://www.hemophilia.org/6023 NHF Employee Highlight - Meet Sonia Roger! https://www.hemophilia.org/news/nhf-employee-highlight-meet-sonia-roger <p><span><em><strong>Meet NHF's Education Specialist, Sonia Roger! As one of NHF's most tenured employees, Sonia is a vital part of the NHF community and loves giving back to families and patients. Learn more about her role at NHF!</strong></em></span></p> <p><strong><span>Tell us a little bit about yourself and your role at NHF. </span></strong></p> Mon, 16 May 2022 12:30:31 -0400 amurtha https://www.hemophilia.org/6021 Bone Health in VWD and Hemophilia Carriers the Focus of Retrospective Study https://www.hemophilia.org/news/bone-health-in-vwd-and-hemophilia-carriers-the-focus-of-retrospective-study <p>The issue of poor bone health represents a significant public health concern in the U.S. population, including for individuals with hemophilia who are at increased risk for low bone mineral density (BMD) and bone fractures. While low BMD in hemophilia has been the focus of previous studies – linked to recurrent joint bleeding, decreased weight bearing, and immobility – less is understood about this complication in other groups. Hemophilia carriers (HCs) and persons with von Willebrand disease (PWvVWD) are two such groups.</p> Mon, 09 May 2022 17:07:41 -0400 jangarola https://www.hemophilia.org/6011 New Data Shows Eptacog Beta Safe and Effective in Pediatric Patients https://www.hemophilia.org/news/new-data-shows-eptacog-beta-safe-and-effective-in-pediatric-patients <p>Newly published data from a phase 3 clinical study suggests that the recombinant factor VIIa bypassing agent (BPA) eptacog beta was used to safely and effectively treat and control bleeding in children with hemophilia A or B with inhibitors, 12 years of age or younger.<br /> </p> Fri, 29 Apr 2022 12:02:58 -0400 jangarola https://www.hemophilia.org/6007 Six New MASAC Documents Issued https://www.hemophilia.org/news/six-new-masac-documents-issued <p><span><span><span><span><span><span>NHF’s Medical and Scientific Advisory Council (MASAC) recently issued six new documents, all of which were adopted by NHF’s Board of Directors on April 27, 2022.</span></span></span></span></span></span></p> Thu, 28 Apr 2022 17:19:51 -0400 jangarola https://www.hemophilia.org/6006 NHLBI Grant Supports Scientific Research to Enhance Hemophilia A Gene Therapies https://www.hemophilia.org/news/nhlbi-grant-supports-scientific-research-to-enhance-hemophilia-a-gene-therapies <p>A group of investigators are embarking on a new research program designed to unpack some of the outstanding fundamental questions associated with current approaches to gene therapy for hemophilia A. While multiple gene therapies are currently in various stages of preclinical or clinical studies there remain concerns relevant to the biological nuances affecting long term safety and efficacy.</p> Mon, 04 Apr 2022 17:05:14 -0400 jangarola https://www.hemophilia.org/5955 NHF Announces Spring Webinar Lineup https://www.hemophilia.org/news/nhf-announces-spring-webinar-lineup <p><span><span><span><b><span><span>NHF Announces Spring Webinar Lineup </span></span></b></span></span></span></p> Fri, 01 Apr 2022 17:20:19 -0400 iostrin https://www.hemophilia.org/5953 NHF Statement on World Hemophilia Day https://www.hemophilia.org/news/nhf-statement-on-world-hemophilia-day <p><strong>FOR IMMEDIATE RELEASE</strong></p> <p><em><strong>Media Contact:</strong></em><br /> Ilana Ostrin<br /> <a href="mailto:iostrin@hemophilia.org">iostrin@hemophilia.org</a><br /> 212-328-3769<br /> <br /> <em>April 17, 2022</em></p> Fri, 01 Apr 2022 14:26:07 -0400 iostrin https://www.hemophilia.org/5952 Hemophilia in the Romanov Family https://www.hemophilia.org/news/hemophilia-in-the-romanov-family <p class="text-align-center"><em><strong>In advance of World Hemophilia Day this year (April 17), NHF sat down with historian Dr. Helen Rappaport to learn more about how hemophilia impacted the Romanov family, and its lasting impact on world history. Read the interview transcript, or watch the video recording.</strong></em><br /> </p> Tue, 29 Mar 2022 20:11:29 -0400 iostrin https://www.hemophilia.org/5948 First Patient Dosed in Freeline’s Dose-Confirmation Trial for Hemophilia B Gene Therapy https://www.hemophilia.org/news/first-patient-dosed-in-freelines-dose-confirmation-trial-for-hemophilia-b-gene-therapy <p>The UK-based biotechnology company Freeline recently announced that the first U.S. patient has been dosed in its Phase 1/2 B-LIEVE dose-confirmation clinical trial of FLT180a for the treatment of hemophilia B. FLT180a is developed with the company’s proprietary adeno-associated viral (AAV) vector and its protein shell capsid, known as AAVS3, to deliver the genetic material that generates therapeutic factor IX levels in hemophilia B patients.<br /> </p> Fri, 25 Mar 2022 17:10:56 -0400 jangarola https://www.hemophilia.org/5947