The Commonwealth of Virginia has recently joined several other states and organizations in proclaiming Feb. 28 as Rare Disease Day.
Sponsored by the National Organization for Rare Disorders, Rare Disease Day is designed to call attention to the public health issues associated with the rare diseases that affect nearly 30 million Americans and countless others around the world.
Rare Disease Day activities in the United States will include a nationwide network of online videos, patient stories and blogs; state and municipal proclamations; a Rare Disease Hall of Fame for researchers; and other activities designed to raise awareness of what it means to have a rare disease.
A rare disease is one that affects fewer than 200,000 Americans.
According to the National Institutes of Health, there are nearly 7,000 such diseases affecting nearly 30 million Americans.
To raise awareness of rare diseases and the need for safe, effective treatments, people around the world will join together to observe the Second Annual Rare Disease Day on Saturday.
The National Organization for Rare Disorders is coordinating this project in the United States and invites all patient organizations, caregivers, researchers, and companies developing orphan products to join in this observance.
The purpose is to focus attention on rare diseases, the challenges encountered by those affected, and the importance of research to develop diagnostics and treatments.
The first Rare Disease Day was organized in Europe last year by the European Rare Disease Organization and was successful in getting many political leaders and members of royal families to help draw attention to the activities.
Organizers hope that Rare Disease Day will become an annual global event on the last day of February.
The Office of Rare Diseases at the National Institutes of Health and the Office of Orphan Products Development at the U.S. Food and Drug Administration have signed on as Rare Disease Day Partners. In addition, all organizations, societies and companies working with rare diseases and/or orphan products are invited to become Rare Disease Day partners.
For more information, visit http://www.rarediseaseday.org. To see more of the News & Messenger or to subscribe to the newspaper, go to http://www.insidenova.com/. Copyright (c) 2009, News & Messenger, Manassas, Va. Distributed by McClatchy-Tribune Information Services. For reprints, email tmsreprints@permissionsgroup.com, call 800-374-7985 or 847-635-6550, send a fax to 847-635-6968, or write to The Permissions Group Inc., 1247 Milwaukee Ave., Suite 303, Glenview, IL 60025, USA.
Copyright (C) 2009, News & Messenger, Manassas, Va.