For the last several years, the National Organization for Rare Disorders (NORD) has had the privilege of working in close collaboration with Members of Congress from both sides of the aisle to advance policies to improve the lives of millions of individuals and families with rare diseases. The progress we’ve made has been remarkable, and it stands as a testament to the dedication, leadership, and bipartisan support of lawmakers who have recognized the urgency of addressing the needs of America’s rare disease patients. This joint effort has been a hopeful reminder of what can be achieved when we work together to prioritize some of the most vulnerable in our society.
Yet rather than celebrating a victory, we find ourselves in disbelief. Despite the momentum, critical health care bills such as the Creating Hope Reauthorization Act, which would reauthorize the Pediatric Rare Disease Priority Review Voucher program for five more years, the RARE Act, the Accelerating Kids’ Access to Care Act, the Innovation in Pediatric Drugs Act, and a longer-term extension of vital telehealth flexibilities all have been left out of the continuing resolution passed by Congress. These bills have received broad bipartisan support and were on the verge of becoming law, but now millions of families are left waiting for the relief they so urgently need.
The inability to act on these critical issues has real consequences. Every day, individuals and families affected by rare diseases face immense challenges—challenges that these bills would help alleviate.
The 119th Congress MUST make passing these critical bills its priority. We believe that lawmakers have a responsibility to serve the people who need them most, and rare disease patients are no exception. Rare diseases impact over 30 million Americans, across all political affiliations, and at any point in time, any family can be touched by a rare disease. We urge Members of Congress to set aside partisan differences and come together to do what is right for those who rely on them.
While immensely disappointed and frustrated, NORD will continue to work tirelessly to see these bills signed into law. Our commitment to the rare disease community remains unwavering and we will not stop until Congress acts in a way that delivers the care and treatment that individuals with rare diseases and their families deserve.
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