Our Board Chair spent a weekend with 20 other people affected by Aortic Aneurysms, Dissections, and ruptures as part of the Aorta Advocate program launched by the John Ritter Foundation for Aortic Health (JRF). The weekend was intense, with people sharing their stories. Some people share stories of their strengths and how they have overcome life with Aortic Dissection and aneurysms. In contrast, others shared their heart-wrenching stories of loss from their Husbands, wives, a

Our board chair traveled to Washington, DC, in July to attend the Rare Disease Legislative Advocate brief with the Rare Disease Caucus. We learned much about the impact of the Inflation Reduction Act (IRA) signed into law in 2022, and its effect on the Orphan Drug Act 1983. The Inflation Reduction Act of 2022 (IRA) could be harmful to the Orphan Drug Act because it could discourage the development of new orphan drugs. The IRA allows Medicare to negotiate the prices of prescr