Ronceverte, WV – On February 28, 2025, Greenbrier County will unite with communities worldwide to observe Rare Disease Day, aiming to raise awareness for the 300 million individuals affected by rare diseases. This international event emphasizes the need for research, support, and policy development to address the unique challenges faced by those living with rare conditions.
In West Virginia, the Center for Excellence in Disabilities at West Virginia University has been instrumental in promoting awareness and support for individuals with rare diseases. Their initiatives highlight unmet needs and advocate for enhanced services within the state’s healthcare system.
Nationally, several events are scheduled to commemorate Rare Disease Day 2025. The EveryLife Foundation for Rare Diseases will host its annual Rare Disease Week on Capitol Hill from February 24 to 26, providing a platform for advocates to engage with policymakers and discuss critical issues affecting the rare disease community.
Additionally, the FDA-NIH Rare Disease Day event, originally planned for February 27-28, has been postponed. Organizers intend to reschedule it in the coming months to ensure comprehensive participation and focus.
Local healthcare providers, patient advocacy groups, and community members in Greenbrier County are encouraged to participate in virtual events, share personal stories, and utilize social media platforms to spread awareness. By joining the global movement, Greenbrier County can contribute to the collective effort to improve the lives of those affected by rare diseases.
For more information on how to get involved, visit the official Rare Disease Day website at rarediseaseday.org.
