News
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…
Black Men with Hemophilia Have a Shorter Life Expectancy than White Men
Health and Well Being, Men with Bleeding Disorders
A researcher of disparities in hemophilia care discusses her findings and what’s still left to learn. by: James Langford In the early…
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…
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…
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…
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…
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…
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…
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…
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…
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…
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. …
Extended Time for Coverage from CMS
Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
HFA reports that the Centers for Medicare and Medicaid Services (CMS) has formally extended the special enrollment period (SEP) created during the…
Hiking with Hemophilia
Health and Well Being, Living with a Bleeding Disorder
Hiking offers people with hemophilia exercise, fun and exhilaration. People with hemophilia benefit from equipment that can lessen the risk of bleeding…
Countries Across the Globe Join the Gene Therapy Race
Gene Therapy, Health and Well Being, Living with a Bleeding Disorder
Canada Considers Funding Patient Gene Therapy; India Conducts First Human Clinical Trials for Hemophilia A An excellent article explains how Canada’s government…
New Device Can Diagnose Hemophilia Fast
Health and Well Being, Living with a Bleeding Disorder
A trio of researchers at Chung Yuan Christian University, Taiwan developed a device that can rapidly determine both blood type and whether…
Fear of Needles?
Health and Well Being, Living with a Bleeding Disorder
A phobia to needlesticks is a real thing. Read a great article here about how one father helped his son with hemophilia…
Takeda Announces Interim Trial Results for Investigational ITP Therapy
Health and Well Being, Industry News & Research
Takeda recently announced positive results from a phase 2 clinical trial of their investigational therapy (Mezagitamab), to treat patients with persistent or…
Think Positive!
Health and Well Being, Living with a Bleeding Disorder
A hemophilia diagnosis can upset your beliefs, feelings, and life. This book, written by Laureen A. Kelley, offers simple, concrete ways to…
Bleeding Disorders Awareness Month
Advocacy & Legislation, GLHF News, Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
Each March, the community calls attention to inheritable blood and bleeding disorders during Bleeding Disorders Awareness Month. This time gives patients and…
Von Willebrand Emergency Care Manual Now Available in Spanish
Health and Well Being, Industry News & Research
NBDF is pleased to announce that the Emergency Care for Patients with von Willebrand Disease treatment manual is now available in a Spanish language…