News

How to Keep Summer Activities Safe for Kids with Bleeding Disorders

Health and Well Being, Living with a Bleeding Disorder

Learn why a popular piece of backyard play equipment is riskier than you might think. It’s summertime, and kids are out of…

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First Sickle Cell Patient to Receive Gene Therapy Featured in NYT

Gene Therapy, Industry News & Research, Living with a Bleeding Disorder

Sickle cell disease is linked to an abnormality in the hemoglobin protein, which normally helps carry oxygen throughout the body via red…

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FDA Approval Includes Full ALTUVIIIO™ Pediatric Trial Results

Industry News & Research

The U.S. Food and Drug Administration (FDA) has approved updated prescribing information for ALTUVIIIO™ (Sanofi) to include the full results of the phase…

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A New Review on Primary Immune Thrombocytopenia

Health and Well Being, Industry News & Research, Living with a Bleeding Disorder

A new review published in the European Journal of Haematology describes the challenges inherent in managing both bleeding and excessive clot risk…

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May is Mental Health Awareness Month

Industry News & Research, Living with a Bleeding Disorder

This month HANDI offers resources that support mental well-being and connect the bleeding disorders community with timely, practical, and readily accessible information.

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NBDF Supports WFH Statement on ISTH Hemophilia Treatment Guidelines

Industry News & Research, Living with a Bleeding Disorder

The NBDF concurs with WFH’s assessment that the proposed guidelines risk setting hemophilia treatment back 30 years.  The National Bleeding Disorders Foundation (NBDF) echoes…

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P2C Announces Partnership to Support Development for Sickle Cell Disease

Health and Well Being, Industry News & Research, Living with a Bleeding Disorder

Pathway to Cures (P2C) announced its collaborative partnership with Afimmune to support the development of Epeleuton as a potential therapeutic for Sickle Cell Disease…

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FDA Approves Second Hemophilia B Gene Therapy Product

Gene Therapy, Industry News & Research, Living with a Bleeding Disorder

The U.S. Food and Drug Administration (FDA) has approved BEQVEZ™ (Pfizer, Inc.), a new hemophilia B gene therapy product. It is designed with…

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New Review Weighs Bleeding and Clotting Risk in ITP

Health and Well Being, Industry News & Research

Primary immune thrombocytopenia is a rare autoimmune disorder that causes a significant reduction in platelets, which are necessary for effective coagulation. A…

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NBDF Celebrates HHS Final Rule Strengthening Protections Against Disability Discrimination

Advocacy & Legislation, Health and Well Being, Living with a Bleeding Disorder

NBDF Celebrates HHS Final Rule Strengthening Protections Against Disability Discrimination Celebrating a monumental victory for individuals with disabilities across the United States. …

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GLHF’s Annual Wisconsin Bleeding Disorders Conference is June 7-9

GLHF News

GLHF’s annual Wisconsin Bleeding Disorders Conference, for people and families living with a bleeding disorder, is June 7-9 at the Kalahari Resort…

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The Importance of Family When Living with Hemophilia: Paul Allen Natvig (September 1953 – October 2023)

GLHF News, Living with a Bleeding Disorder

Jan Natvig (holding Emi); Paul Natvig (holding David).

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GLHF Wraps 2024 Best Bloody Mary Competitions with Great Success!

GLHF News

GLHF wrapped the last of its 2024 Best Bloody Mary competitions in Green Bay on May 5! Our three Best Bloody Mary…

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Green Bay Resident Became First Wisconsinite to Receive Gene Therapy Treatment for Hemophilia A

Gene Therapy, Industry News & Research, Living with a Bleeding Disorder

A Green Bay resident became the first Wisconsinite to receive a gene therapy treatment for hemophilia A since it was approved by…

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NBDF Announces New Treatment Recommendations for Bleeding Disorders

Industry News & Research, Living with a Bleeding Disorder

New documents issued by NBDF’s Medical and Scientific Advisory Council (MASAC) cover a wide range of topics relevant to bleeding disorder patients…

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Pfizer Announces its Gene Therapy, Beqvez, Approved by US FDA

Industry News & Research, Living with a Bleeding Disorder

Pfizer Inc. announced that its gene therapy Beqvez (fidanacogene elaparvovec-dzkt) has been approved by the US FDA for treating adults with moderate…

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More Gene Therapy Trials from New Players

Gene Therapy, Industry News & Research, Living with a Bleeding Disorder

ReciBioPharm and GeneVentiv Therapeutics are developing GENV-HEM, a gene therapy for hemophilia patients, including those with inhibitors. ReciBioPharm will help GeneVentiv take GENV-HEM from preclinical development to Phase 1/2…

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Medexus Pharmaceuticals Received FDA Approval for Hemophilia B Treatment, Ixinity®

Industry News & Research, Living with a Bleeding Disorder

Medexus Pharmaceuticals has received FDA approval for their hemophilia B treatment, Ixinity®, for children under 12. This approval, based on positive Phase…

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Does Your HTC Administer Gene Therapy?

Gene Therapy, Industry News & Research, Living with a Bleeding Disorder

Not every HTC administers gene therapy. CSL Behring has updated their website so that patients can locate HTC’s that have its gene…

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Extended Time for Coverage from CMS

Health and Well Being, Industry News & Research, Living with a Bleeding Disorder

HFA reports that the Centers for Medicare and Medicaid Services (CMS) has formally extended the special enrollment period (SEP) created during the…

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Privacy Please!

Advocacy & Legislation, Living with a Bleeding Disorder

Patient privacy continues to be a huge concern worldwide, especially in the healthcare field, and especially online. The states of Washington, Nevada,…

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Hemophilia and Poetry

Living with a Bleeding Disorder

To finish up National Poetry Month, let’s consider two more poets with hemophilia. by Richard J. Atwood To me, poetry specializes in the…

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NBDF Releases Hemophilia Fast Facts

Industry News & Research, Living with a Bleeding Disorder

NBDF’s announces the availability of a Hemophilia Fact Sheet. This two-page PDF document was created to fill the need for a current, accessible…

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Hiking with Hemophilia

Health and Well Being, Living with a Bleeding Disorder

Hiking offers people with hemophilia exercise, fun and exhilaration. People with hemophilia benefit from equipment that can lessen the risk of bleeding…

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