News
VWD: A Glimpse into Tomorrow’s Treatments
Industry News & Research, Living with a Bleeding Disorder
A session on von Willebrand Disease (VWD) at the National Bleeding Disorders Foundation Conference this past summer, highlighted patient-driven treatment advancements and…
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…
Celebrating 50 Years of GLHF and You! Join Us on Sunday, October 13 for Our Community Picnic!
GLHF News
GLHF has been serving the bleeding disorders community for 50 years here in Wisconsin! It has been our honor to educate, support,…
Come Walk With Us on September 28! Help Us Raise Crucial Funs to Support GLHF Programs and Services
GLHF News
We are just under two weeks away from this year’s Unite Walk! Join us at the Milwaukee County Zoo in Zoo Terrace…
Navigating the Complexities of Hemophilia as a Family – In Loving Memory of James F. King, Sr.
GLHF News, Living with a Bleeding Disorder
“When I get to heaven, I will not forget about any of my grandchildren — and that includes Finnian (Patrick) and Liam,”…
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,…
Pfizer Announces New Data from Hemophilia A Gene Therapy Study
GLHF News
Pfizer has announced positive topline results from their phase 3 clinical study of giroctocogene fitelparvovec, the company’s investigational hemophilia A gene therapy. …
Attention Clinicians! New Bleeding Disorders Education Available from IHS
Industry News & Research
These new medical-based webinars will speak to key topics relevant to the care of patients with inherited bleeding disorders. NBDF is excited…
New Resource Compilation on Gene Therapy for Hemophilia
Gene Therapy, Industry News & Research
Learn about Gene Therapy for Hemophilia with NBDF’s new resource collection. Find answers, research, and support. The National Bleeding Disorders Foundation (NBDF) is…
NBDF Announces a New Enduring and Accredited Educational Activity Available to Healthcare Providers
Industry News & Research
The National Bleeding Disorders Foundation (NBDF) is pleased to announce a new enduring and accredited educational activity available to healthcare providers. “Exploring…
Camp Klotty Pine – Celebrating Independence, Friendship and Fun – Celebrating Another Successful Year!
GLHF News
Camp is an unforgettable experience for anyone fortunate enough to participate. Just one week each summer can give you memories that will…
BioMarin to Narrow Its Commercial Focus for Hemophilia A Gene Therapy
Gene Therapy, Industry News & Research
BioMarin recently announced that they will be changing the scope of their efforts to manufacture and market their gene therapy product ROCTAVIAN.™…
France Gets Gene Therapy
Gene Therapy, Industry News & Research, Living with a Bleeding Disorder
by: Patricia Inácio, PhD | July 9, 2024 Hemgenix, the first approved hemophilia B gene therapy, was administered to two patients in France, marking the first time…
Defining Gene Therapy for Patients
Gene Therapy, Industry News & Research, Living with a Bleeding Disorder
Gene therapy is a welcome treatment for patients, which has been anticipated for decades. But how do parents and patients discuss this…
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…
NBDF Unveils THRIVE Campaign: Empowering Individuals with Bleeding Disorders through 6 Essential Steps
Industry News & Research
The National Bleeding Disorders Foundation (NBDF) announces the THRIVE campaign to raise awareness and educate on living healthily with bleeding disorders. The…