On February 14, 2023, FCS patient Giuliana & FCS Foundation Co-President, Melissa Goetz & Congressman Tonko celebrated the HEART Act legislation passing in December 2022.
We are thrilled to share news of a significant breakthrough in the fight against familial chylomicronemia syndrome (FCS).
Recently, Representatives Tonko and Pallone & Senators Murray and Casey introduced legislation that would advance research into FCS and other rare diseases. This critical legislation was passed on December 23, 2022, and creates a program to support and promote research, improve the quality of life for those living with FCS and other rare diseases, and helps ensure that patients have access to life-saving treatments.
At the FCS Foundation, we applaud Representatives Tonko and Pallone & Senators Murray and Casey for their commitment to advancing research on rare diseases like FCS. This legislation represents a significant step forward in the fight against FCS and other rare diseases, and we are proud to support its passage. We know first hand how important it is to raise awareness about rare diseases like FCS and to provide support for those living with these conditions.
Together, we can continue to make progress in the fight against FCS and other rare diseases. The FCS Foundation remains committed to working with lawmakers, researchers, and other stakeholders to improve the lives of those affected by this devastating disease.