News

People with hemophilia considering gene therapy are wrestling with concerns including the cost of treatment and variations in results. You only get…

Learn how mild, moderate, or severe hemophilia influences lifestyle choices and medical care. Your hemophilia doesn’t define who you are. But it…

The findings could help further define VWD and address current challenges in treatment. The age that a person is first tested for…

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

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

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

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

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

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,…