News

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…

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

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

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

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

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

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

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

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

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

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

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…

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

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

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

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

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

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…

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

Much is the same when it comes to hemophilia A and B, but a few key differences change how common—and how treatable—they…

Did you know? Gene therapy is the use of genetic material to treat or prevent disease. Research into gene therapy for hemophilia…

Canada Considers Funding Patient Gene Therapy; India Conducts First Human Clinical Trials for Hemophilia A An excellent article explains how Canada’s government…

Although it was eagerly anticipated, commercial sales of gene therapy are disappointing. BioMarin’s hemophilia treatment Roctavian had only one US patient last year….

A trio of researchers at Chung Yuan Christian University, Taiwan developed a device that can rapidly determine both blood type and whether…