Subject
title
Proclamation Declaring February 28, 2026, 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 fewer 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. There are nearly 300 million people worldwide living with a rare disease, along with their families and caregivers. The theme
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 who 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 a lack of access to treatments. While more well-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 treatments.
With nearly 1 in 10 Americans having some kind of rare disease, this issue affects thousands of residents of Maryland. On this Rare Disease Day, it is encouraged that the City of Rockville community learn more about rare diseases through resources such as EURORDIS and NORD, and to spread awareness.
Mayor and Council History
The Mayor and Council present this proclamation annually.
Public Notification and Engagement
Rare Disease Day at NIH will be held at NIH Main Campus (Natcher Conference Center) on Friday, Feb. 27, 2026, from 9 a.m. to 5 p.m. EST. There will be a virtual livestream via NIH VideoCast with the event archived for replay afterward. The event agenda will feature panel discussions, rare diseases stories, in-person exhibitors, 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.
The U.S. Food and Drug Administration (FDA) will host Rare Disease Day, a virtual public meeting, on Monday, February 23, 2026 in global observance of Rare Disease Week. The theme is: “Moving Forward. Looking Ahead. An Event for Patients.” The goal of this year’s Rare Disease Day is to explore ways to engage and collaborate with patients and their communities to support and accelerate the development of medical products for rare diseases. We want patients to connect with FDA and stay involved with our outreach and engagement programs to ensure the patient voice informs medical product development and regulation throughout FDA. Panels will discuss:
• Patient Focused FDA Initiatives
• Patient Engagement Opportunities
• Addressing Challenges and Opportunities with AI Technology
• Utilizing Real World Data and Real World Evidence at FDA
This program is open to the public.
View Meeting Information and Agenda <https://www.fda.gov/news-events/fda-meetings-conferences-and-workshops/public-meeting-fda-rare-disease-day-2026-02232026?utm_medium=email&utm_source=govdelivery>
Register <https://touchpoints.app.cloud.gov/touchpoints/0cbe46ce/submit?utm_medium=email&utm_source=govdelivery>
For any inquiries regarding this initiative, please send an email to: FDARareDiseaseDay@fda.hhs.gov <mailto:FDARareDiseaseDay@fda.hhs.gov>
Follow the FDA Oncology Center of Excellence <http://www.fda.gov/OCE?utm_medium=email&utm_source=govdelivery> on X @FDAOncology <http://www.twitter.com/@fdaoncology?utm_medium=email&utm_source=govdelivery>