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Creating Connections in Our Community
…topics, from the basics of hemophilia and von Willebrand disease to the latest research breakthroughs and new drug therapies. Join us for educational sessions, networking opportunities, and our awards luncheon,…
Patient Groups Urge Supreme Court to Swiftly Take Up Health Care Case
Industry News & Research
…U.S. Supreme Court to immediately take up the case of Texas v. United States. The case is the latest court challenge to the health care law known as the Affordable…
NHF, WFH, EHC Monitor Coronavirus Impact on Bleeding Disorders Community
Industry News & Research
The National Hemophilia Foundation (NHF) has been monitoring the latest information on the current coronavirus (2019-nCoV) as it pertains to the bleeding disorders community. The Plasma Protein Therapeutics Association (PPTA)…
A Message from the WFH President and the WFH CEO
COVID-19
…El Ekiaby, MD, (Egypt) to share the latest updates and to answer your questions. You have heard it said many times already—these are unprecedented times. We are all being challenged…
Homepage
…of a chronic bleeding disorder. Learn More Community Events We’re bringing the bleeding disorders community together to create connections and build a support network. Learn More Camp Children with bleeding…
All Copays Count Coalition Statement on Draft 2023 CMS Notice of Benefit and Payment Parameters
Advocacy & Legislation, Industry News & Research
The latest breaking news from the All Copays Count Coalition. In response to additional rulemaking for the Centers for Medicare & Medicaid Services’ (CMS) Notice of Benefit and Payment Parameters…
Catalyst Reports Positive Trial Updates for Subcutaneous Therapy for Hemophilia
Industry News & Research
…trial subjects. Seven subjects have completed dosing in the trial, two are currently dosing, others are completing screening and enrollment is now complete. The mean annualized bleed rate (ABR) among…
Researchers Look at Clinical Outcomes in FXIII Babies
Industry News & Research
…when compared to most other nations, sought to understand the risk factors and clinical features of these patients in the hopes of forestalling serious bleeding complications in the future. The…
BioMarin to Submit Marketing Applications to FDA and EMA
Industry News & Research
…company’s investigational gene therapy for the treatment of adults with hemophilia A. Valoctocogene roxaparvovec uses adeno-associated viruses (AAVs) as vectors to carry the genetic codes that prompt the production of…
Sangamo and Pfizer Announce Interim Gene Therapy Findings
Industry News & Research
…study of their hemophilia gene therapy candidate SB-525. Known as Alta, the dose ranging clinical study is designed to assess both the safety and tolerability of SB-525 in patients with…
Octapharma Announces FDA Approval of Updated Nuwiq® Prescribing Information to Include Immunogenicity Data in Previously Untreated Patients
Industry News & Research
…The updated NUWIQ® PI includes data from the NuProtect study, which was the largest prospective study of a single FVIII product in true PUPs. Patients received NUWIQ® for prophylaxis or…
Sigilon Announces a Priority Shift in Light of Clinical Trial Setbacks
Industry News & Research
The phase 1/2 trial of SIG-001 for hemophilia A has been on an FDA clinical hold since July 2021. Sigilon Therapeutics recently announced a “strategic reprioritization,” as the company shifts…
First Patient Dosed in Freeline’s Dose-Confirmation Trial for Hemophilia B Gene Therapy
Industry News & Research
The company’s investigational gene therapy has been developed for individuals with severe or moderately severe hemophilia B. The UK-based biotechnology company Freeline recently announced that the first U.S. patient has…
Takeda Announces Trial Results on Investigational Therapy for Ultra Rare Blood Disorder
Industry News & Research
TAK-755 is being investigated for the treatment of congenital thrombotic thrombocytopenic purpura. Takeda recently announced favorable results from a phase 3 study of TAK-755, the company’s investigational enzyme replacement therapy…
The Liver Disease That’s on the Rise
Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
…energy, the liver plays a crucial role in the body’s ability to regulate blood clotting. Rising Rates of MASLD A 2023 study conducted by researchers at the Charles R. Drew University of…
CDC Calls for Stakeholder Comments on Pain, Pain Management and Opioid Use
Industry News & Research
…note: Comments received, including attachments and other supporting materials, are part of the public record and are subject to public disclosure. Comments will be posted on www.regulations.gov. Therefore, do not…
COVID-19 Assistance Programs
COVID-19
…These funds vary in amounts and eligibility criteria so please check with each organization to see if you qualify. Contact Karin, GLHF’s Director of Camp and Community Outreach, at kkoppen@glhf.org…
We Stand With You
GLHF News
…Lakes Hemophilia Foundation and affiliated chapters across the nation, condemns discrimination of ANY Kind. We Stand with You. We are committed to being part of the solution. Read more www.hemophilia.org…
Unanswered Questions Remain in Gene Therapy Trial
Industry News & Research
This commentary was authored by six individuals with severe hemophilia, all of whom have worked to achieve better health outcomes for patients with bleeding disorders. Read more Source: www.hemophilia.org…
New Chief Scientific Officer Joins NHF
Industry News & Research
…have a significant role supporting work that can have a generational impact on people who live with inheritable blood disorders.” To learn more about NHF’s commitment to research, visit https://www.hemophilia.org/research.…
BioMarin Presents Abstract on Vector DNA Transmission Risk at ISTH
Industry News & Research
…years post treatment. Lab tests of blood, saliva, urine, stool, and semen samples were performed at baseline and throughout the study until three consecutive negative samples could be identified –…
GLHF’s Inaugural Green Bay’s Best Bloody was a Success!
GLHF News
…Vandergriff, GLHF’s Event Coordinator. The community truly embraced our event and we can’t wait to come back again next year!” Green Bay’s Best Bloody included seven bars, multiple volunteers and…
Hemophilia B— An Excellent Candidate for Gene Therapy
Industry News & Research
…gene therapies being studied for hemophilia are focused on the two most common forms of the condition, hemophilia B is a promising candidate since the F9 gene is much smaller,…
News