News
VONVENDI Approved for Prophylaxis
Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
The FDA has expanded the indication for VONVENDI, a recombinant von Willebrand factor replacement therapy. It is now approved for prophylactic treatment…
A Milestone Victory for the Global Bleeding Disorders Community
Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
Dedicated advocacy work by the World Federation of Hemophilia (WFH) has resulted in crucial changes to the World Health Organization (WHO) Essential…
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…
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…
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,…
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,…
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…
NFRC Features Resources Supporting Joint Heath in People with Bleeding Disorders
Advocacy & Legislation, Health and Well Being, Living with a Bleeding Disorder
Discover Resources on Bleeding Disorders and Joint Health Summer is now in full swing, with the sunny promise of more opportunities to…
Beware Healthcare
Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
The Coalition for Hemophilia B has summarized threats to healthcare from the current administration. What’s at risk? Currently, more than 24 million…
Prophy Treatment Research is Promising
Living with a Bleeding Disorder
Roche announced positive data from its Phase I/II NXTAGE trial of NXT007, a next-generation investigational therapy intended as a prophylactic treatment option…
PBM Podcast
Health and Well Being, Living with a Bleeding Disorder
Listen to a podcast on the power of PBM — pharmacy benefit managers. First exposed in LA Kelley Communications’ issue of PEN…
HemoLife Podcast
Health and Well Being, Living with a Bleeding Disorder
This podcast, hosted by L.A. Aguayo, a man with hemophilia who is an elite body builder, encourages conversations among members of the…
GLHF’s Bleeding Disorders Conference Offered a Weekend of Connection and Community
GLHF News, Living with a Bleeding Disorder
Earlier this summer, families from across Wisconsin gathered at the Kalahari Resort in Wisconsin Dells for GLHF’s annual Wisconsin Bleeding Disorders Conference….