Rare Disease Week​​

Rare Disease Week was a whirlwind of events and opportunities to raise awareness for Isolated Congenital Asplenia and advocate for Congressional support for the Newborn Screening Saves Lives Reauthorization Act (Senate Bill S. 2158) and the creation of the FDA Rare Disease Center of Excellence. From Tuesday’s Rare Disease Congressional Caucus Briefing to Wednesday’s Legislative Conference to Hill Day on Thursday where we shared our Rare stories with Senator Martha McSally and other Congressional staffers and finally Friday’s Rare Disease Day at the National Institutes of Health (NIH), we shared Travis’s story and why it is so crucial to support better research for Isolated Congenital Asplenia and the 7,000 other known rare diseases that impact 30 million Americans.