News
B Informed!
Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
For thirty years, the Coalition for Hemophilia B has improved the quality of life for people with hemophilia B and their families…
Telling Your Life Story?
Health and Well Being, Living with a Bleeding Disorder
With the advent of self-publishing, many people who live with hemophilia, including patients, spouses, and children, are sharing their personal stories by…
New Study Uncovers Breakthrough for Long-Term Hemophilia A Gene Therapy
Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
new preclinical study led by CHOP researchers, published in Nature Communications, offers promising insights into the long-term effectiveness of hemophilia A gene therapy….
2025 World Hemophilia Day Theme Revealed
Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
The World Federation of Hemophilia (WFH) announced the 2025 World Hemophilia Day theme: Access for All: Women and Girls Bleed Too. Learn…
Ask a Social Worker: Can Someone with a Bleeding Disorder Join the Military?
Health and Well Being, Living with a Bleeding Disorder
Learn the steps you need to take if you’re interested in serving your country. To ask a social worker, email askasocialworker@bleeding.org. Learn More….
Talking to Teens and Young Adults with Bleeding Disorders About Safer Sex
Health and Well Being, Living with a Bleeding Disorder
Learn why and how you should have these tough conversations. Learn More Source: National Bleeding Disorders Foundation, October 2024
How Parents of Kids with Bleeding Disorders Can Avoid Burnout
Health and Well Being, Living with a Bleeding Disorder
Planning ahead and safeguarding your own health – physical and mental – can help keep your responsibilities from overwhelming you. Read More….
Critical Policy Updates: Medicaid Changes, ACA Credits, and More
Advocacy & Legislation, Health and Well Being, Industry News & Research
Dive into NBDF’s August 2024 Government Relations Update for essential information on Medicaid unwinding, ACA premium tax credits, NIH reform, and state-level…
Beyond Band-Aids: The Evolution of Bleeding Disorders Treatment
Health and Well Being, Living with a Bleeding Disorder
At the National Bleeding Disorders Foundation’s Conference this past summer, Dr. Karen Zimowski highlighted the latest personalized treatments for inherited bleeding disorders,…
Charting New Waters in Women’s Bleeding Disorders Care
Health and Well Being, Living with a Bleeding Disorder, Women with Bleeding Disorders
A session led by Dawn Rotellini at the National Bleeding Disorders Conference this past summer, spotlighted inclusive care for women with bleeding…
Learn More About Gene Therapy
Gene Therapy, Health and Well Being, Industry News & Research
A comprehensive document identifies 50 various publications about gene therapy, much of it accessible for parents and patients. The list includes: FAQs,…
Gene Therapy’s Slow Start
Gene Therapy, Health and Well Being, Industry News & Research
Multimillion-dollar gene therapies were long awaited and desired, but patients were unsure whether insurance would cover the costs. So far, very few patients are…
Navigating Labor, Delivery, and Postpartum with a Bleeding Disorder
Health and Well Being, Living with a Bleeding Disorder, Women with Bleeding Disorders
Learn why creating a birth plan with your medical team is essential. Source: National Bleeding Disorders Foundation, HemAware, September 2024
A Nurse Practitioner Decodes Medical Research for the ’Gram
Advocacy & Legislation, Health and Well Being, Living with a Bleeding Disorder
Maya Bloomberg has drawn thousands of social media followers by making information on hemophilia and sickle cell anemia easier to understand. Source:…
HANDI Highlights Back-to-School Resources
Health and Well Being, Living with a Bleeding Disorder
New Resources to Help Students with Bleeding Disorders. Learn more about how to help students, families, and school personnel become better prepared…
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,…
Planting the Seeds of Leadership
Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
NBDF’s National Youth Leadership Institute (NYLI) provides 18-24 year olds in the bleeding disorders community with leadership opportunities to encourage personal growth,…
Travel Tips for Young Adults with Bleeding Disorders
Health and Well Being, Living with a Bleeding Disorder
A globe-trotting college traveler shares advice for traveling safely. Having a bleeding disorder shouldn’t keep you from seeing the world. Just ask…
PTSD Can Affect People with Bleeding Disorders
Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
While post-traumatic stress disorder is commonly connected with soldiers, people battling chronic illnesses can have it, too. Here’s how to identify the…
HANDI Highlights Resources on Pain Management
Health and Well Being, Living with a Bleeding Disorder, Pain Management
As we enter the “dog days” of summer with high temperatures and heat weighing folks down throughout much of the US, it’s…
FDA Rare Disease Innovation Hub to Enhance and Advance Outcomes for Patients
Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
by: Patrizia Cavazzoni, MD, Director, Center for Drug Evaluation and Research and Peter Marks, MD, PhD, Director, Center for Biologics Evaluation and…
Hemophilia Affects Everyone – What Are Some Truths About the Care Partner Journey?
Health and Well Being, Living with a Bleeding Disorder
Hemophilia truth time: hemophilia is a shared experience—affecting family, friends, and loved ones. In a global survey of more than 2700 participants,…
ERIN Initiative Champions Inclusivity in Inherited Bleeding Disorders
Health and Well Being, Living with a Bleeding Disorder
Discover how the European Rare & Inhibitor Network (ERIN) is breaking barriers and advancing inclusivity for those with inherited bleeding disorders. This…
For People with Bleeding Disorders, Adherence Is Still a Problem
Health and Well Being, Living with a Bleeding Disorder
Even as therapies for hemophilia have expanded and improved, the issue of not following treatment regimens as directed remains a major point…