Friday, November 22, 2024
11/22/2024
Project Summary/Abstract The National Hemophilia Foundation (NHF) has over 70 years of experience advocating for persons with multiple inherited bleeding disorders (IBD). As the needs of IBD patients evolve in relation to both advancements in diagnostics and treatment options, and an increasingly diverse population (e.g. ethnicity/race, age, gender/sex), a comprehensive approach to identifying gaps and concerns will ensure patient access to optimal care. For example, pursuits in IBD biomedical research often prioritize one bleeding disorder over another and eclipse studies into the psychosocial impacts of IBD on patients and caregivers. Though this method has revolutionized medical care for some, it fails to consider the needs of the entire community, especially as the community prepares for gene therapy and its first-ever generation of aging patients. Among the enormity of these developments, the patient voice can be lost, and researchers too often rely on their own scientific expertise rather than patient input to determine IBD community outcomes, resulting in misused time and funding. To respond to these monumental shifts within the IBD community, stakeholders must coalesce around patients. As such, in the second quarter of 2021 (tent. May), NHF will hold the State of the Science Research Summit, inviting the IBD community to define the next decade of IBD research and patient care. The objective of this two-day Summit is to dismantle traditional approaches to IBD research by amplifying a diverse patient perspective, enabling patients to serve as key decision makers in the creation of an aligned, national research agenda to be adopted by all stakeholders. Specific Summit aims are as follows: 1. Present an overview of traditional IBD research as well as the aggregated results of pre- Conference stakeholder initiatives 2. Utilize breakout working groups to identify, define, and prioritize research priorities (4-6) among conference attendees 3. Determine and assign roles to all stakeholders as they relate to the newly established agenda Mirroring the mission of the NHLBI, this Summit will improve upon the health and quality of life of those diagnosed with IBD by centering on the needs of the patient population as the community’s foremost consideration. In addition to the IBD patient-centric agenda, the Summit will allow for the creation of a template that other rare disease organizations may use to develop their own patient-centric and disease- specific conferences and agendas.
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