News
Beyond the Bleeds Podcast (Powered by the Hemophilia Outreach Center) Explores Hemophilia from Camp Klotty Pine to Advocacy with GLHF
Advocacy & Legislation, Gene Therapy
Beyond the Bleeds, a Podcast powered by the Hemophilia Outreach Center, and hosted by heather Hansen and John Mazzariello, recently welcomed GLHF’s…
Join us for the Wisconsin Bleeding Disorders Conference, June 6-8, at the Kalahari Resort in Wisconsin Dells. Register now Through May 1!
Advocacy & Legislation, GLHF News, Industry News & Research, Living with a Bleeding Disorder
Whether you’re new to the bleeding disorders community or have been a part of it for years, GLHF’s Wisconsin Bleeding Disorders Conference…
NBDF Enhances Health Access with Strategic Department Expansion
Advocacy & Legislation, Industry News & Research, Living with a Bleeding Disorder
NBDF Expands Health Access Initiatives Through Strategic Department Evolution Foundation Continues Mission Alignment with Enhanced Focus on Health Access, and Innovation to Better Serve Growing…
CDC Changes Affect Bleeding Disorders Community
Advocacy & Legislation, Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
A Message from Phil Gattone, NBDF President and CEO Major restructuring at HHS has placed nearly all CDC Blood Disorders Division staff…
New Scholarships for Students with Inherited Bleeding Disorders
Advocacy & Legislation, Living with a Bleeding Disorder
Every year the Neil Frick Resource Center (NFRC) (formerly HANDI) assembles a list of post-secondary educational scholarships that are available to students…
The Bleeding Disorders Community Needs Your Help to Prevent Cuts to Federal Health Programs
Advocacy & Legislation, GLHF News, Industry News & Research
Earlier this week, the Trump Administration announced drastic changes and reductions to the federal health programs that support the bleeding disorders community….
A Gene Therapy Discontinued
Advocacy & Legislation, Gene Therapy, Industry News & Research, Living with a Bleeding Disorder
Less than a year after FDA approval, Beqvez, a gene therapy for hemophilia B, has been discontinued. Manufactured by Pfizer, the one-time…
NBDF’s New Video Series: Voices for Policy Change
Advocacy & Legislation, Industry News & Research, Living with a Bleeding Disorder
“Voices for Policy Change” is an on-line resource designed to educate, empower and mobilize on important legislative issues related to bleeding disorders…
New Federal Policies and Your Coverage
Advocacy & Legislation, Living with a Bleeding Disorder
Read Hemophilia Federation of America’s excellent “Word from Washington” about how new policies can affect you and overage for your medical care….
Together We Advocate. Together We Make a Difference.
Advocacy & Legislation, GLHF News
Advocates from across Wisconsin have been using their voices, making a lasting impact, and driving change for access to healthcare in both…
Read, Learn, Act!
Advocacy & Legislation, Living with a Bleeding Disorder
The year has already seen incredible changes with a new presidential administration and over 45 new executive orders. A great article explores…
Watch NBDF’s Testimony on Key Prescription Drug Affordability Bill!
Advocacy & Legislation, Living with a Bleeding Disorder
Want to hear firsthand how NBDF is advocating for the bleeding disorders community? Watch the video of Bill Robie, NBDF’s Senior Director…
Make Your Voice Heard! Join us on February 18 to Advocate for the Bleeding Disorders Community of Wisconsin. Register by February 1!
Advocacy & Legislation, GLHF News
With many newly elected legislators in Wisconsin, it is crucial to speak up and share what it is like to live with…
Washington Days 2025, NBDF’s Annual Advocacy Event, is March 5-7
Advocacy & Legislation, Industry News & Research
Are you ready to advocate for the bleeding disorders community? Join us at Washington Days 2025 for a powerful and impactful experience. Learn…
New Video Series: Voices for Policy Change
Advocacy & Legislation, Living with a Bleeding Disorder
Voices for Policy Change is a video series created by the National Bleeding Disorders Foundation (NBDF) designed to educate, empower and mobilize the community about important legislative…
Can Someone with a Bleeding Disorder Join the Military?
Advocacy & Legislation, Living with a Bleeding Disorder
When you turn 18, you need to sign up with Selective Services. Will the armed forces accept someone with a bleeding disorder?…
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…
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:…
Where is Your HTC?
Advocacy & Legislation, Living with a Bleeding Disorder
Do you need an HTC? A new HTC? Do you need to find one when you travel across the US? Check out the…
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…
What is “Health Equity”?
Advocacy & Legislation, Living with a Bleeding Disorder
Unfortunately, health inequities are a sad reality in the United States health care system. Together with the inheritable blood and bleeding disorders…
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. …
Privacy Please!
Advocacy & Legislation, Living with a Bleeding Disorder
Patient privacy continues to be a huge concern worldwide, especially in the healthcare field, and especially online. The states of Washington, Nevada,…
The Joy of Lobbying the Senate on Behalf of my Sons with Hemophilia
Advocacy & Legislation, Living with a Bleeding Disorder
How I advocated for the bleeding disorders community on Capitol Hill. by: Joe MacDonald Last Thursday, I visited Washington, D.C., to join my…