NHF has convened a Steering Committee and working groups with healthcare providers, researchers, people affected by bleeding disorders and other subject matter experts to distill the important insights you’ve shared and define research priorities.

 

Read more from ATHN Chief Science Officer Dr. Michael Recht about the important topics in focus for this initiative.

 

Meet the State of the Science Steering Committee

 

Diverse working groups have been convened based on the themes from the community’s input.

 

Each working group is tasked with addressing key research questions on these topics and defining opportunities, based on well-defined criteria, to foster actionable research to benefit the community.

  • How can we use new technologies to discover therapies that make life with hemophilia easier?
  • What is needed to introduce more targeted and accessible diagnostics and therapies for people with bleeding disorders?
  • How can we better understand the biology of these rare diseases and what do we need to know to improve diagnosis and treatment?
  • How can we improve care for women with bleeding disorders through new tools like non-invasive prenatal testing for therapies for reproductive system bleeding?
  • Where can we make the greatest impact on equal access to care and more inclusive coverage? What digital tools could be implemented?
  • How can we encourage more trainees to join our professional community?
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