By Jenifer Waldrop, Executive Director, RDDC, BWHI

Every year, the rare disease community eagerly anticipates Global Rare Disease Day as an opportunity to raise awareness, share groundbreaking research, and celebrate advancements in patient care. Traditionally, government agencies such as the Food and Drug Administration (FDA) and the National Institutes of Health (NIH) play an instrumental role in these efforts, hosting events that bring together researchers, advocates, and patients. However, this year, not only were government-sponsored events for Rare Disease Day at the NIH Campus in Bethesda, MD abruptly canceled, but federal staff were also prohibited from attending independent advocacy events such as the Resilient, Impassioned, Strong, and Empowered (RISE) Award Reception, at which the NIH’s National Center for Advancing Translational Sciences (NCATS) was to be recognized for its critical contributions to the field.

NCATS is dedicated to transforming the translational science process to accelerate the development of diagnostics and treatments for rare and neglected diseases. By addressing bottlenecks in research and fostering cross-sector collaborations, NCATS plays a crucial role in ensuring medical advancements reach all patients, particularly those in historically underserved communities.

This decision sends a troubling message to the rare disease community. NCATS has been a champion for accessibility in rare disease research, working tirelessly to bridge the gaps in diagnosis, treatment access, and medical innovation. Through initiatives like the Rare Diseases Clinical Research Network (RDCRN), NCATS fosters collaboration between researchers, healthcare providers, and patients, accelerating discoveries and ensuring that historically medically underrepresented populations are included in research efforts. Their work is essential to advancing health equity for individuals living with rare diseases.

The recent prohibition of government staff from attending in-person advocacy events is more than a mere logistical inconvenience; it diminishes the impact of years of hard work and collaboration. When patient advocacy organizations like the Rare Disease Diversity Coalition (RDDC) host events recognizing government partners for their contributions, these moments are more than ceremonial; they reinforce trust, demonstrate commitment, and showcase the value of public-private partnerships in rare disease research.

By barring government officials from participating, the administration iscreating a perception that the federal government does not prioritize all communities equally. These restrictions not only alienate dedicated researchers and policymakers but also risk undermining the rare disease community’s trust in public institutions. Patients and advocates who rely on these partnerships to advance research and access to treatments now find themselves questioning whether their voices are truly being heard.

While concerns about travel costs, security, or logistical burdens may have informed these decisions, the administration must recognize the broader consequences. Rare disease advocacy requires collaboration across all sectors—government, academia, industry, and patient organizations. The absence of government leaders at key events weakens these essential connections and slows progress toward greater inclusive health outcomes.

Moving forward, policymakers must reassess these restrictions and ensure that government support for the rare disease community is not just a policy on paper but a visible, active commitment. Allowing federal staff to attend in-person events alongside advocates and patients is not just about recognition—it is about fostering meaningful partnerships that drive progress. The government must demonstrate that it values all people, especially those living with rare diseases who already face systemic barriers to care. Words alone are not enough; action is necessary to prove that no community is left behind.