NVHR is excited to announce that we will be hosting a Hepatitis C Patient Summit in 2019!
Of the approximate 5 million people living with hepatitis C (HCV) in the U.S., 50-75% of those individuals do not know their status. Of those individuals whose HCV status is known, a very small percentage are engaged with community-based organizations or advocacy efforts. The purpose of NVHR’s Patient Summit is to change this dynamic.
The Summit, the first national patient gathering of its kind, will address the need for greater patient engagement and patient leadership in the HCV field. It will provide an opportunity for patients recently or currently living with HCV, who have not had experience engaging in other advocacy programs, to come together to develop shared goals. The NVHR Patient Summit will emphasize recruitment of individuals from disproportionately impacted and marginalized communities to ensure the demographics of attendees reflect the demographics of the HCV epidemic.
The NVHR Patient Summit will provide a mechanism for community-building among people directly impacted by HCV and help to cultivate new leaders and new voices in the field. It will provide a framework for ongoing engagement among participants with each other and for distribution of the Summit’s findings to the national HCV advocacy community. Many patient conferences are geared toward service providers and academics and provide education about disease states and medications but do not create much space for discussion nor advocacy. The Summit will disrupt this norm by bringing HCV patients together to build new relationships, serve as experts to each other, and to inform NVHR’s programmatic and advocacy work.
Over the coming year, we will share more information about the development of the Summit including details about the application process for attendees. NVHR is pleased to begin work on this new initiative and looks forward to sharing updates with the NVHR community.
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