At NBDF, we work to ensure that lived experience experts – people who live with bleeding disorders, their family members, and their support network – are heard in all aspects of research. That means we offer several different ways that people can get involved in research, whether through sharing their experiences through NBDF’s Community Voices in Research, enrolling in a clinical trial, or supporting NBDF’s research programs.
Living with a bleeding disorder, such as hemophilia, von Willebrand disease, a rare factor deficiency, or a platelet disorder, gives a person knowledge and understanding that is unique. People with bleeding disorders and their family members and loved ones bring nuanced, firsthand knowledge that strengthens every stage of the research process. They can improve the relevance of research questions and identify outcomes that reflect what they value. More and more, researchers are understanding that having lived experience experts involved in every phase of research – from project design to recruitment to assessing outcomes – makes their findings stronger and more relevant.
How You Can Get Involved
Enroll in Community Voices in Research (CVR). Community Voices in Research is NBDF’s community-powered registry which collects information directly from lived experience experts and their loved ones on topics such as the impact of care at an HTC, mental health issues, pain management, treatment adherence, family dynamics, and other issues that matter to people who live with bleeding disorders. The data collected from CVR has been cited in several research papers to date; adding your experience will deepen our understanding. All information that is shared with researchers is de-identified, aggregated, and all personally identifying information is removed.
Enroll in a Clinical Trial. Clinical trials are one of the most important parts of the research process. Clinical trials test new or improved therapies to see if they can be used to treat conditions such as bleeding disorders. Before considering enrolling in a clinical trial, it’s important that a person understands the process completely. You can learn more about clinical trials here.
Support Research Programs: NBDF funds bleeding disorders research from basic science and pre-clinical studies to clinical research, innovative treatment development, and patient-centered data initiatives. NBDF supports the next generation of researchers, as well as the nurses, physical therapists, and social workers who improve care every day. Make a donation today.
How NBDF Can Help You
It is one of NBDF's goals to make sure all people with bleeding disorders can connect with resources and support so they can lead full and healthy lives. We provide:
- A local chapter network to connect with others who understand
- Educational resources for every stage of life
- The Neil Frick Resource Center for specific questions
- Webinars, conferences, advocacy programs, and research initiatives
Join our mailing list to stay up to date on what NBDF can offer you and your family.
Make a Difference
Your support helps fund research for better treatments and ensures that lived experience experts’ voices are heard in bleeding disorders research.