Vice President Of Community And Corporate Affairs
CurrentExpand the value proposition for both non-profit patient advocacy organizations and for-profit bio- pharmaceutical companies to be members of NORD or its Corporate Council. Facilitate improved relations with industry to further collaboration and expand fundraising base. Seek out new corporate partners to diversify support. As a leadership team member, provide strategic input on illustrating the value proposition for all partners – corporate, non-profit members, sponsors, and supporters.- Launched NORD EmpowerHealth – a program that will increase the literacy of NORD member organizations regarding health care coverag and insurance access. This program will allow NORD member organizations to better advocate for their constituents and interact with policymakers. Over $350,000 has been raised in 2024 from corporate sponsors.- Reorganized the NORD Corporate Council to focus on specific issues within the two existing working groups: Patient Advocacy & Engagement and Policy. o Patient Advocacy & Engagement Working Group focused on developing guidelines for biopharmaceutical companies to engage with patient advocacy organizations on specific issues (preclinical/clinical stage engagement, prelaunch/postlaunch engagement and regulator/policymaker engagement). o Created Public Policy newsletter so that Working Group meetings can focus on a specific issue.- Established a Regulatory Affairs Working Group for the NORD Corporate Council where dialogue can occur with the FDAon a specific regulatory topic.- Develop and host the CEO Perspectives session at the annual NORD Rare Diseases and Orphan Products Breakthrough Summit. This session allows invited CEOs to engage directly with the audience.