News
Grappling with Healthcare Changes: States Begin Preparing for the Implementation of Medicaid Work Reporting Requirements Under H.R. 1
Advocacy & Legislation, Health and Well Being, Living with a Bleeding Disorder
Track your state’s readiness to implement the changes under H.R. 1 at the CFF’s tracker and find your state-specific name for its Medicaid…
What Treatments are Available for Bleeding Disorders?
Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
Do you know the full range of therapy choices for you or your loved one? Read a great summary of information presented…
Pain and Joint Problems Drive Higher Depression, Anxiety in People with Hemophilia
Health and Well Being, Industry News & Research
According to a study published in Haemophilia, patients with hemophilia face heightened risks of depression and anxiety due to pain and joint issues,…
Protecting Mental Health Care and Standards
Health and Well Being, Living with a Bleeding Disorder
The Bleeding Disorders Substance Use and Mental Health Access Coalition (BD SUMHAC) has been working to identify leaders in states who will…
Why is Gene Therapy So Slow to Gain Customers?
Gene Therapy
The bleeding disorder community predicted “a cure by 2000.” While that didn’t happen until much later, gene therapy finally arrived with much…
Focus on Females
Living with a Bleeding Disorder, Women with Bleeding Disorders
While von Willebrand Disease can appear in both men and women equally, the symptoms affect females more by far. A Guide to Living…
Raising a Child with Hemophilia is Back!
Health and Well Being, Living with a Bleeding Disorder
The world’s first parenting book on hemophilia written by a parent of a child with hemophilia, now updated for the 6th edition,…
Alhemo Approved for Patients 12 and Older
Industry News & Research
The U.S. Food and Drug Administration (FDA) has approved Alhemo (concizumab-mtci) injection (60 mg, 150 mg, or 300 mg) as a once-daily…
First Participant Dosed in BeCoMe-9 Trial of BE-101
Industry News & Research
Be Biopharma announced that a first participant was dosed in the BeCoMe-9 Trial of BE-101for hemophilia B. BE-101 is a first-in-class, engineered…
School Is Back in Session! So How Do We Educate Our Educators About Bleeding Disorders?
Health and Well Being, Living with a Bleeding Disorder
You can best explain your child’s bleeding disorder to his or her teachers with this great, customized guide from Hemophilia Resources of…
ABCs and IEPs
Living with a Bleeding Disorder
Students with bleeding disorders may qualify for an Individualized Education Program (IEP). With an IEP, and depending on students’ needs, a school…
Mental Health Mondays!
Health and Well Being, Living with a Bleeding Disorder
Join the Coalition for Hemophilia B every week for an ongoing series that features practical tools and calming moments to help you take…
Provider Webinar Focuses on Bone and Mental Health for Women
Health and Well Being, Living with a Bleeding Disorder, Women with Bleeding Disorders
Women with bleeding disorders need to be screened for anxiety/depression and bone health. A new webinar for healthcare providers discusses case studies…
New Name, Big Goals
Advocacy & Legislation, Living with a Bleeding Disorder
The Bleeding Disorders Research Collaborative (formerly the National Research Blueprint) is signaling a change from planning to action – all with the…
Protecting Access to Care
Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
Twenty-one states have filed suit to block implementation of the Marketplace Integrity Rule, arguing that it will create barriers to coverage and…
Why Aren’t People Choosing Gene Therapy?
Gene Therapy, Health and Well Being, Living with a Bleeding Disorder
At the turn of the 21st century, gene therapy was heralded as a possible “cure” for hemophilia. However, now that gene therapy…
Celebrating September: Awareness Highlights
Health and Well Being, Living with a Bleeding Disorder, Pain Management
September is filled with important observances that bring awareness to various causes. Join NBDF in celebrating Hispanic Heritage Month, Suicide Prevention Month, Pain Awareness Month,…
Women Bleed Too: Closing Gaps in Bleeding Disorder Care
Industry News & Research, Women with Bleeding Disorders
Women and girls with bleeding disorders face delays in diagnosis and care. Learn how research and community voices are changing the future…
Resources for Milwaukee County Residents Affected by Flooding
GLHF News
Milwaukee residents and organizations are coming to the forefront to aid communities impacted by severe flooding. Here are resources to help with…
Meet Emmett’s Dinos!
GLHF News
Register today for the Unite for Bleeding Disorders Walk, September 27 at the Milwaukee County Zoo! Cheri Bowman’s son, Emmett, was born in…
How the “One Big Beautiful Bill” Harms the Bleeding Disorders Community
Advocacy & Legislation
Federal cuts will disrupt access to lifesaving care for thousands in our community. Read about the projected impacts — and what you…
Research in Children and Adolescents with Inherited Bleeding Disorders
Industry News & Research, Living with a Bleeding Disorder
This session of the Research Journal Club explores the latest advances and challenges in research focused on children and adolescents with inherited…
Why Genetic Testing Matters for Girls at Risk for Hemophilia
Gene Therapy, GLHF News, Living with a Bleeding Disorder, Women with Bleeding Disorders
Research reveals that many at-risk girls aren’t getting tested, which may lead to missed diagnoses and delayed care. Source: National Bleeding Disorders…
Bleeding Disorder Self-Care and Self-Advocacy When You’re at College
Health and Well Being, Living with a Bleeding Disorder
Follow these tips to manage your condition while you’re away from home and on your own. Source: National Bleeding Disorders Foundation, August…