News

New Study Suggests Prophylactic Treatment May Reduce “Brain Bleed” Risk for People with Hemophilia A

Industry News & Research

Results of a new study published in the Journal of Blood Medicine (JBM), indicate that people with hemophilia A (HA) who have…

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Discover the New Steps for Living Website Coming Soon!

Health and Well Being, Living with a Bleeding Disorder

The National Bleeding Disorders Foundation (NBDF) is thrilled to announce the upcoming launch of the revamped Steps for Living website, your ultimate…

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It’s Camp Season! Camp Klotty Pine is August 4-9! Register Today!

GLHF News

Camp Klotty Pine is a place of encouragement, mentoring, and education. It is a space that allows everyone to be uniquely themselves, breaking…

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Huge Win for Advocacy Groups as People with Bleeding Disorders See Increased Equity and Access to Behavioral Health Facilities

Advocacy & Legislation, Health and Well Being

The Bleeding Disorders Substance Use and Mental Health Access Coalition, National Bleeding Disorder Foundation (NBDF), and Hemophilia Federation of America (HFA), are…

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Bleeding Disorders Substance Use and Mental Health Access Coalition

Health and Well Being, Living with a Bleeding Disorder, Pain Management

The BD SUMHAC was created from tragedy. A young man with a bleeding disorder facing a substance use disorder was repeatedly denied…

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What is “Health Equity”?

Advocacy & Legislation, Living with a Bleeding Disorder

Unfortunately, health inequities are a sad reality in the United States health care system. Together with the inheritable blood and bleeding disorders…

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Gene Therapy Candidates Face ‘Once in a Lifetime’ Choice

Gene Therapy, Health and Well Being, Living with a Bleeding Disorder

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

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Get to Know Bleeding Severity Levels for Hemophilia

Living with a Bleeding Disorder

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

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New Study Reveals That Age Affects von Willebrand Disease Diagnosis

Health and Well Being, Living with a Bleeding Disorder, Men with Bleeding Disorders, Women with Bleeding Disorders

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

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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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