Regulations, policy, appropriations … NIH, Capitol Hill, FDA, CDC, etc. – How does all of this fit together? It seems that there are always rules and procedures that limit our RARE progress. This session will focus in on how a unified and focused RARE community can best influence the decision makers that impact RARE policy, regulation, and funding, and discuss how and when to engage your community in the process. We’ll close with a brief overview of current RARE Diseases policy issues and then discuss how to best engage together the common good for.
Goal: Every participant leaves the session knowing his or her work on policy, no matter how limited or pervasive, is important, required, and does have an affect