In response to the recent unexpected number of recalls and other product safety issues, HFA and NHF have responded to our community’s needs and assembled a Safety Summit to be held in January of 2020. These events have highlighted the need to articulate communication standards that will serve us well as we enter into a new and uncharted era of gene therapy and other novel treatments. The issue of safety and properly communicating issues to the community is important to everyone which is why we have invited all representatives of the key stakeholder groups to join us. Community leaders, patient organizations, industry partners, and regulators will be in attendance. At this invitation-only summit, we plan to identify gaps in knowledge and understandings of current drug safety standards, develop educational resources to address the identified gaps, create a Patient Bill of Rights and Responsibilities, and complete a patient/organization-authored white paper along with any other materials identified that could benefit the community. We anticipate sharing preliminary outcomes shortly after the Summit and expect the white paper will become public by the spring.
If there are issues/questions that you would like to be addressed at the summit, please submit them to The Patient Voice, an inbox created by HFA and NHF to hear your concerns, and we will work to ensure they are discussed. The primary goal of the summit is to ensure safety is put front-and-center in the mind of every community member and that we are equipped to ensure it remains a crucial piece as we move forward.
