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…Blood Disorders, upcoming topic on its public health webinar series will focus entirely on NHF’s evidence-based guideline on hemophilia care. The webinar, “Evidence-based Guideline on Hemophilia Care: A Model for…

GLHF respects patient and family freedom of choice. When the need for factor distribution to a patient for use at home is identified, patients and families have a right to…

…truly themselves and open about their lives with a bleeding disorder. Camp is staffed with highly-trained counselors and an expert medical team of Hemophilia Treatment Center staff providing a safe…

…more. Read about these policies, as well as news about: Prior authorization reforms The end of 2023 open enrollment period for ACA coverage Proposed Marketplace rules for 2024 Read more…

The Food and Drug Administration (FDA) has announced that FDA’s Rare Disease Day is Monday, February 27. Registration is open for this virtual event. Dr. Robert M. Califf, Commissioner of…

…outlook for the future of women’s bleeding disorder care. Experts emphasized that ongoing research and open dialogue are driving significant improvements in treatment and understanding.  Rotellini stated, “We’re witnessing a…

…the larger rare disease community navigate important intersections across the FDA that affect patients with rare diseases, such as medical devices, including diagnostic tests, and combination products. Enhance intercenter collaboration…

…tactics and dispelling its harmful lies, we can prevent mental illnesses like major depression and anxiety. Join for open dialogue and effective strategies rooted in scientific research. Let’s overcome perfectionism…

The 2024 Unite Walk season is in full swing! Join...

…that NHF has done a wonderful job giving resources to our community. I urge them to continue doing research and finding greater accessibility to treatment options and government-level advocacy for…

…As patients face the dual threats of the pandemic and the financial crisis, this work couldn’t come at a more critical time. About 10.4 percent of non-elderly adults and 4.1…

…with a number of other leading patient advocacy groups to petition the Court. NHF will continue its advocacy on behalf of the bleeding disorders community and will update the community…

The National Hemophilia Foundation will be holding our quarterly Board of Directors meeting on Saturday, October 10th at 9:00 AM EDT. The Board of Director meetings are open to the…

…research and development continue to yield novel therapies that offer both improved protection from bleeds and greater ease of administration. In 2020, innovation has made possible the realization that patients…

…research and development continue to yield novel therapies that offer both vastly enhanced protection from bleeds and greater ease of administration. In 2020, innovation has made possible the realization that…

The National Hemophilia Foundation will be holding our quarterly Board of Directors meeting on Thursday, May 28th at 7:00 PM EDT. The Board of Director meetings are open to the…

…interested in learning more about self-advocacy and patient-centered research! HFA’s Research Team has been awarded a Patient Centered Outcomes Research Institute (PCORI) Eugene Washington Engagement Award to fund the WIRED…

As a community, we know how important it is for people with bleeding disorders to maintain comprehensive health insurance. Amid the uncertainty of the ongoing coronavirus emergency, we want to…

…the broader medical community may not be privy to the full breadth and scope of the USHTCN, its intricate and deliberate structure, and its adeptness at meeting the physical, psychosocial,…

…gain coverage, and nearly 1 million Americans would see their coverage become more affordable. If finalized, the proposed rule would take effect before the open enrollment period for 2023 coverage….

…of the pandemic and the financial crisis, this work couldn’t come at a more critical time. About 10.4 percent of non-elderly adults and 4.1 percent of children in the U.S….

…joint pain, headache and common cold symptoms. There was one serious AE reported, a catheter site abscess. In addition, 80.7% of the patients in this study arm did not experience…

…exploring this further in the ongoing Phase 3 study.” “As part of our overall commitment to the hemophilia community, we are excited by the clinical potential of BIVV001 to overcome…

…factors contributing to these variations by studying responses to the therapy in mouse models. The oral presentation, “Investigating Mechanisms of Variability of AAV5-hFVIII-SQ Expression in Mice,” described the study in…