The National Down Syndrome Society (NDSS) works to create a world where individuals with Down syndrome thrive. In line with that mission, NDSS is committed to advancing policies that protect individuals with Down syndrome and other disabilities from discrimination in the organ transplant system.
NDSS has been working with Congress to advance the Charlotte Woodward Organ Transplant Discrimination Prevention Act. The House passed Charlotte’s bill with broad, bipartisan support in June 2025. As the bill was prepared for markup in the Senate, the Senate Health, Education, Labor and Pensions (HELP) Committee proposed major changes as part of a manager’s amendment, including changes to the legislation’s enforcement framework. These changes were made with little time for NDSS and other stakeholders to review. Given the importance of those provisions, NDSS believes additional time is appropriate to ensure shared clarity regarding implementation and patient protections.
Charlotte’s bill is supported by a diverse group of stakeholders representing the disability and medical community. NDSS will continue to work with Congress and our partners to move Charlotte’s bill forward and ensure robust protections for the Down syndrome community. We will share information in the coming weeks about additional advocacy opportunities and steps we are taking to end organ transplant discrimination.