Subject
title
Proclamation Declaring February 28, 2025, as Rare Disease Day in Rockville, Maryland
end
Department
City Clerk/Director of Council Operations Office
Recommendation
Staff recommends Mayor and Council read and approve the proclamation.
Discussion
A disease is rare when it affects less than 200,000 people in the country, and in the United States there are about 10,000 rare diseases and conditions that impact between 25 and 30 million Americans.
Founded by Rare Diseases Europe (EURORDIS) in 2008, the awareness event was created to bring attention to rare diseases as a public health concern. In 2009, EURORDIS partnered with the National Organization for Rare Disorders (NORD) to bring the event to the United States and propel an international campaign that shines light on rare diseases and health equity to all that live with them.
Many of these diseases are debilitating conditions that have a significant impact on the lives of those affected. Not only are these people impacted, but their families also face the difficulties of diagnosis delays, finding a medical expert, and lack of access to treatments. While more known diseases gain more sympathy and resources towards treatments, the families of rare disease victims live through the burden of also trying to raise public awareness.
While more than 450 drugs and biologics have been approved for the treatment of rare diseases according to the Food and Drug Administration (FDA), millions of Americans still fight forms of rare diseases for which there are no approved treatment.
With nearly 1 in 10 Americans having some kind of rare disease, this issue is one that affects thousands of residents of Maryland. On this Rare Disease Day, it is encouraged to the City of Rockville community to learn more about rare diseases through resources such as EURORDIS and NORD, and to spread awareness.
Mayor and Council History
Mayor and Council present this proclamation annually.
Public Notification and Engagement
FDA-NIH Rare Disease Day 2025 will be held at National Institutes of Health Main Campus 900 Rockville Pike, Bethesda Maryland, MD 20892 (Natcher Conference Center) on Thursday, Feb. 27, 2025, and Friday Feb. 28, 2025, from 10 a.m. to 4 p.m. EST. The event will feature panel discussions, rare diseases stories, in-person exhibitors and scientific posters, and an art exhibition. The event is free and open to the public. If you are interested in presenting a scientific poster or being an exhibitor, please visit the registration website for more information.