Stephanie Lapidow, Executive Director of the Hemophilia Association of New Jersey (HANJ), is leading the charge to protect patients from predatory insurance practices through critical state legislation (S-3818/A-5217).
🎙 Tune In! NBDF's Bill Robie Talks HB 1216 & Rx Costs
Today, we're sharing a powerful letter from Emily Ouellette, Executive Director of the Bleeding Disorders Alliance of North Dakota (BDAND), featured on February 18, 2025, in the Minot Daily News.
Beginning in 2025 with the 119th Congress and the January 20th Presidential Inauguration, Republicans will take control of the White House and the two chambers of Congress, the Senate flippi
Government Relations Update – February 2024
The new VWD guidelines were published in 2020 and heavily integrate the patient voice. But how can you use these in your conversations with healthcare professionals? This session will take a deeper dive into the specific recommendations, where patients and healthcare professionals need to decide together on the best plan of care. You will learn essential skills in shared decision-making to advocate for the care you need.
With new treatments, remote work options, and an ever-changing economy, work and career decision-making can feel like a whole new calculation these days. This session will cover what to consider about job options when you have a bleeding disorder, whether or what disclosure about your bleeding disorder should be made, how to communicate about needed accommodations, and what rights you have as a job applicant and as an employee.
NBDF provides free quality education on issues that matter to the bleeding disorders community. This video is on blood and product safety 2021
This piece is a joint effort by Amy Niles, executive vice president at the PAN Foundation, and Kollet Koulianos, vice president of payer relations at the National Hemophilia Foundation.
WASHINGTON, D.C.— December 31, 2021 — In response to additional rulemaking for the Centers for Medicare & Medicaid Services’ (CMS) Notice of Benefit and Payment Parameters (NBPP
The National Hemophilia Foundation is thrilled to announce the full implementation of its top legislative priority from 2020, The Hemophilia SNF Access Act. This critical law will rectify a long-standing problem to improve access to skilled nursing facilities (SNFs) for Medicare beneficiari
FOR PUBLIC COMMENT - JUNE 3, 2021
Pregnancy and childbirth for women with bleeding disorders take extra planning and care. Come learn from an expert and community member about issues women with bleeding disorders face when pregnant and giving birth, and how to advocate for the care you need.
No matter what setting, be it school, day care or the treatment center, we all want to be the best advocate for our child. But sometimes this is easier said than done. As parents and caregivers of young children with hemophilia and an inhibitor many of us know all too well that anxiety, frustration and miscommunication can thwart even the best of intentions.
People with bleeding disorders and caregivers often educate schools, workplaces, health care teams and communities to ensure the right care and support to thrive. The Hemophilia Experiences, Results and Opportunities (HERO) study found that while many people are satisfied with support from partners, friends and family, a major roadblock to support from others was lack of knowledge about bleeding disorders.
