The NRB represents an opportunity to redefine the treatment of bleeding disorders. This important initiative has only been possible thanks to the incredible contributions of so many community members and leaders since 2020. Never before have we had so much engagement from every corner of our community, with clear appreciation for the opportunity ahead of us to make a real difference for the next generation.

Now, as we begin to put this community-driven idea into practice, we need your participation!

"As a person living with and the parent of children who are now young adults with a rare bleeding disorder, I can bring a perspective that is only seen from the inside. This insight is so beneficial for researchers to consider ensuring the most inclusive and impactful improvements to the treatment of this rare disorder." 

– Pat Deratto, LEE

 

Join the NRB Pilot

  1. If you are a person affected by a bleeding disorder, consider participating as a Lived Experience Expert (read more on this important role here! If you are connected to this community as a researcher, health professional, community partner or chapter, government partner or industry member, consider joining to share your expertise. The NRB needs your involvement through a variety of committees, working groups, and advisory boards, and welcomes everyone to join!

Click here to sign-up or contact NBDF for more information.

 

Participate in Other Research Opportunities

  1. If you haven’t already, please consider joining Community Voices in Research (CVR).  This initiative is aimed at understanding the personal experience of living with a bleeding disorder and providing critical data to help identify the community’s most pressing needs. Participants get access to a Personalized Dashboard connecting them to additional opportunities to participate in research, among other things. Click here to learn more info on how to join! 
  2. Consider participating in Virtual Advisory Panels and other research projects. For more information, contact NBDF’s Research Department

Encourage Others to Join

  1. Spread the word! Talk with your friends, family, and colleagues about the NRB and encourage them to consider signing up to participate as LEEs in the process. Check here to sign up for more information.

Stay Connected with NRB Progress

  1. Learn more about the NRB during NBDF’s annual Bleeding Disorders Conference in Atlanta scheduled for September 2024.
  2. Sign-up to follow our journey:
  3. Check the National Research Blueprint page online
  4. Sign up for email communications
  5. Follow us online on Facebook, X/Twitter and LinkedIn!
  6. Consider donating to NBDF to support the first NRB research projects. For more information, click the “Give” button at the top of the page.

 

“As a person living with a bleeding disorder who works in medicine, I embrace the opportunity to guide research that will impact patients like me. LEEs provide the human element to research and ensure research goals align with the goals of our community."

– Kyle Davis, MD, LEE