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August 19, 2019

Nebraska’s Neena Nizar Seeks Cure for Jansen’s, One of World’s Rarest Diseases

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Imagine living your whole life with a painful disease so rare that only 25 others worldwide have what you have. And that you’re one of just six such people ... Read more

August 19, 2019August 19, 2019

Marstacimab Improves Clotting in Hemophilic Blood Samples Tested in Lab, Study Reports

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Marstacimab, an experimental treatment in clinical testing for hemophilia A and B, was able to restore clotting in hemophilic blood and plasma tested in laboratory assays, according to a ... Read more

August 16, 2019

Hemlibra Superior to Factor VIII Therapies in Hemophilia A Patients Without Inhibitors, Trial Data Show

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Preventive treatment with Hemlibra (emicizumab) is superior to replacement therapy with factor VIII infusions for reducing bleed rates in people with hemophilia A without inhibitors, a pooled analysis of trials ... Read more

August 14, 2019August 14, 2019

Variations in Certain Immune Genes May Help Predict Risk for Developing FVIII Inhibitors in Hemophilia A

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Genetic variations in certain immune-related genes, namely the HLA and IL-10 genes, are linked with an increased risk for developing inhibitors against factor VIII replacement therapies in patients with ... Read more

August 12, 2019August 12, 2019

Hemophilia Patients at Greater Risk for Hypertension, Swedish Study Finds

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The prevalence of hypertension is higher in patients with hemophilia than in the general population, according to a nationwide study in Sweden with long-term follow-up. In contrast, no differences ... Read more

August 9, 2019August 9, 2019

Mitsubishi Tanabe Launching Project to Develop Gene Therapies for Hemophilia B

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Mitsubishi Tanabe Pharma is joining forces with researchers from Jichi Medical University to launch a program in Japan focused on developing a gene therapy product to treat patients with hemophilia ... Read more

August 7, 2019August 7, 2019

NHF, HFA Seek Additional Explanations From Bayer on Mislabeled Kogenate Recall

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The National Hemophilia Foundation (NHF) and Hemophilia Federation of America (HFA) asked Bayer to clarify the risks to the hemophilia community, and the potential effects, of the recent voluntary ... Read more

August 5, 2019August 5, 2019

Parent’s Sense of Burden Higher When Child Overweight and Has Inhibitors, Study Finds

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The presence of inhibitors and excessive body weight increase the sense of disease burden felt by parents of children with moderate to severe hemophilia, a study reports. The study ... Read more

August 2, 2019August 2, 2019

HFA’s FIRST Program, Promoting Women in Patient-centered Research, Wins PCORI Grant

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To encourage more women to take part in disease research, the Patient-Centered Outcomes Research Institute (PCORI) has chosen the Hemophilia Federation of America (HFA) and its FIRST project to ... Read more

August 2, 2019August 2, 2019

Oklahoma Ranks Lowest on Programs Key to Rare Diseases on NORD’s 2019 State Report Card

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Oklahoma suffers more tornadoes than any other state, has the highest per-capita rate of women in U.S. prisons, ranks second in the number of teen births per 100,000 teenage ... Read more

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