March 2022 - In response to requests from Haystack participants for increased educational programming, Haystack created the Advocacy Empowerment Institute (AEI). AEI is designed to cover a range of topics, recognizing that rare and ultra-rare organizations are often required to be experts in many things, from governance and fundraising to translating complex healthcare policies into patient-centric advocacy concepts. The AEI program also includes a speaker series on topics of interest to the rare and ultra-rare disease community and advocates.
In March the AEI's guest speaker was the President and Executive Director of the National Academy for State Policy, Hemi Tewarson, JD, MPH. The National Academy for State Health Policy (NASHP) is a nonpartisan forum bringing together state government policymakers to discuss health policy challenges – for the purpose of sharing and learning from each other and then leading and implementing in their home states. Discussing the latest policy intelligence and ideas, and sharing best practices across states is central to NASHP’s mission.
Hemi spoke about the healthcare issues that state policymakers are currently focused on, shared insights on rare disease health issues from the state perspective, and graciously agreed to continue the conversation to see how some of Haystack Project’s issues might be addressed at different state forums.