February 28 is World Rare Disease Day, a day dedicated to raising awareness of rare diseases and improving access to care for patients and their families. For American patients and their families, this observance is especially needed, and especially meaningful, this year, as some members of the current US administration aim to dismantle the Affordable Care Act (ACA). The protections of the ACA, like coverage for preexisting conditions and the elimination of caps on coverage, are critical to patients with rare diseases. Let’s remember the needs of people with rare diseases during health care policy conversations. Better yet, let’s have people with rare diseases IN those conversations!