Advocacy

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

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.