News

GLHF Partners with Local Bars and Restaurants to Raise Funds for the Bleeding Disorders Community. Join Us November 9 for Bingo Night at Hamburger Mary’s – and Let Us Know if You Would Like to Sponsor an Event!

GLHF News

GLHF partnered with Just J’s in West Allis for their first Mark Monty Memorial Poker Run on August 14. Riders enjoyed breakfast…

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Supreme Court Decision and Genetic Testing

Health and Well Being, Industry News & Research

by: Laurie Kelley Thoughts on how the Supreme Court decision on abortion might affect genetic testing outcomes. Read more here. The recent…

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Does Gene Therapy Face Uphill Battle? Gene Therapies for Hemophilia Treatment Will Face Strong Market Headwinds, Research Suggests

Industry News & Research

Solid market position of Hemlibra and strong prescriber interest in RNAi and TFPI treatment options, combined with patient concerns regarding gene therapies,…

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Additional Health Risks for Men with Hemophilia

Health and Well Being, Living with a Bleeding Disorder

Diabetes and infection with human immunodeficiency virus (HIV) increase the risk of high blood pressure (hypertension) among men with hemophilia, a U.S. study…

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Get Ready for the Hemocraft ™ Challenge! Loosely Based off of the Hit Video Game Minecraft, Hemocraft Teaches Kids the Importance of Staying Prepared and Sticking to a Treatment Plan!

Living with a Bleeding Disorder

What is Hemocraft ™? In partnership with the Entrepreneurial Game Studio at Drexel University, the National Hemophilia Foundation, and members of the…

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Gallery Captures Hemophilia Lives: Photographer Rankin Captures The Humanity in People with Hemophilia

Health and Well Being, Living with a Bleeding Disorder

“Portraits of Progress” is a project in partnership with CSL Behring that charted 60 years in the fight against hemophilia, and that…

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Gene Therapy and Bleeding Disorders: Where Are We Now, and What’s on the Horizon?

Industry News & Research

The National Hemophilia Foundation’s 16th Workshop on Novel Technologies and Gene Transfer for Hemophilia, held in November, addressed these questions and more….

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Hemophilia B— An Excellent Candidate for Gene Therapy

Industry News & Research

Current hemophilia B treatments offer strong protection from bleeds, but impact patient lifestyle and require consistent infusions to keep protection levels high.1…

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Making Sense of It All – Gene Therapy

Industry News & Research

What exactly is a gene? What happens when genes mutate? And can gene therapy research help solve problems related to mutations? Learn…

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Paper Features Q&A Resource on Shared Decision Making and Gene Therapy

Industry News & Research

The Q&A resource highlighted here is meant to encompass all stages of a patient’s decision making journey in gene therapy. As investigational…

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BioMarin Presents Abstract on Vector DNA Transmission Risk at ISTH

Industry News & Research

The focus of the abstract is the investigational hemophilia A gene therapy, valoctocogene roxaparvovec. BioMarin recently shared findings from a phase 3…

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The High Cost of Hemophilia

Advocacy & Legislation, Health and Well Being, Industry News & Research

Just one bleed in people with severe hemophilia A receiving prophylaxis has the potential to negatively affect health-related quality of life, and raise…

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Prophylactic Therapy for Glanzmann Thrombasthenia Moves Towards Clinical Trials

Industry News & Research

Glanzmann Thrombasthenia is an ultra-rare inherited bleeding disorder that is characterized by poorly functioning platelets. The recent Congress of the International Society…

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Sanofi Provides Fitusiran Trial Updates at ISTH

Industry News & Research

These updates were presented during the International Society on Thrombosis and Haemostasis (ISTH) Congress in London. Sanofi recently shared new clinical trial…

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NHF Addresses Potential Contraception Bans

Advocacy & Legislation

A statement from the National Hemophilia Foundation. Abortion and contraception can both be critical components of an individual’s health care journey. However,…

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Read the HFA’s Latest Legislative Updates – State of the States July 2022

Advocacy & Legislation

Read the Hemophila Federation of America’s (HFA) latest legislative update – State of the States, July 2022. This update includes information on…

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Camp Klotty Pine, August 8-13, in Kewaskum!

GLHF News

Camp Klotty Pine, August 8-13, is in Kewaskum. Children with bleeding disorders experience life-changing experiences that are exciting, empowering and educational in…

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GLHF’s Inaugural Green Bay’s Best Bloody was a Success!

GLHF News

GLHF’s inaugural Green Bay’s Best Bloody was held July 10. “The support from the Green Bay Community; event sponsors; donors; volunteers; and the local media…

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Novel Pilot Program to Focus on Genetic Diseases and Precision Medicine

Industry News & Research

A newly launched program is designed to advance a diagnostic and precision medicine approach in newborns. The Rady Children’s Institute for Genomic…

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NHF Requests Risk Evaluation and Mitigation Strategy for Pending Gene Therapy Treatments

Industry News & Research

Read a citizen’s petition that was formally submitted to the Food and Drug Administration by NHF. On July 1, the National Hemophilia…

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New Genotyping Recommendations Issued by MASAC

Industry News & Research

The new recommendation describes the proven benefits of genotyping people with hemophilia NHF’s Medical and Scientific Advisory Council (MASAC) has approved a…

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NHF Responds to Roe v. Wade Reversal

Advocacy & Legislation

NHF Statement in Response to the June 24, 2022 Supreme Court Ruling  “The National Hemophilia Foundation (NHF) is aware of today’s Supreme…

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Black Women with Bleeding Disorders Are Striving to Be Seen and Heard

Health and Well Being, Living with a Bleeding Disorder

by: Andrea Collier Black women who have inheritable blood and bleeding disorders often face obstacles all along their journey—from diagnosis to treatment…

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Parents in the Bleeding Disorders Community Share Their Best Advice

Health and Well Being, Living with a Bleeding Disorder

HemAware asked parents for their best advice on what has helped them navigate their children’s bleeding disorders in the first few years…

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