Welcome to the NHF's State of the Science Research Summit!
Dear colleagues and friends,
Working together, we have made tremendous progress in the diagnosis, treatment and life-long management of inherited bleeding disorders. Yet we can all agree that there is much more to be done.
With improved technologies and greater attention to the community, I see tremendous opportunities to foster dramatic changes that can advance care in a more holistic and equitable way and can redefine what it means to live with an inherited bleeding disorder.
But to make this happen, we need to listen, understand, and coordinate our efforts around those areas that matter the most for individuals with these disorders. This warrants broad community alignment on defined research priorities driven by the voices of the community – the individuals, families and all the allied health professionals and partners who are invested in this effort.
This is why the National Hemophilia Foundation (NHF), as the largest national organization dedicated to improving lives for people with inherited bleeding disorders, is championing this community-driven effort to define and prioritize patient-centered research with quantifiable outcomes. Read our announcement for our roadmap to bring this to life.
As part of this effort, we are convening the State of the Science Research Summit, a virtual community dialogue scheduled for September 12-15, 2021. The Summit will bring together voices from across our community to address some of the most pressing issues faced by people with these disorders, and to agree on specific and actionable activities that should be guided via a National Research Blueprint, to be published early next year.
We are looking forward to several days of active discussion, featuring the experiences of patients, providers and allied professionals who support the community. We will address critical topics, including underserved areas such as ultra-rare disorders and care for women and girls with these disorders. Sessions will feature plenary presentations and panel discussions from multi-disciplinary experts. Each includes opportunities for live patient and caregiver participation as well. I encourage you to review the interactive program here for more information.
NHF is serving as the catalyst for this important journey, but this is much bigger than us. This is about all of us coming together to change lives for the better. Research creates discovery, discovery creates change, and change creates impact for people with inherited blood disorders, both today and for generations to come.
I look forward to welcoming you, virtually, in September for the State of the Science Research Summit!
Research reported in this publication was supported by the National Heart, Lung, And Blood Institute of the National Institutes of Health under Award Number R13HL158209. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.