Today is World Rare Disease Day, and we ask you to join millions of members of many fellow organizations, in actively observing this event.
Please make an effort today to speak with friends and colleagues about Huntington's disease, as part of this world-wide effort to build greater awareness of rare diseases, and the need for increased support of research and care services for the 250 million people affected by rare diseases around the globe.
"There are nearly 30 million Americans -- and millions more around the world
-- affected by rare disease," said Peter L. Saltonstall of NORD (National Organization of Rare Disorders). "Everyone knows someone with a rare disease. But, while many of these diseases are serious and lifelong, most have no treatment and many are not even being studied by researchers. This leaves patients and families without hope for a better future."
To build upon today's observance, we ask that you also take the time to tell your story on video, or write it down and send it to us with photographs so we may post it on the "Faces of Huntington's" section of the HDSA national website. (Email to firstname.lastname@example.org, or send to Faces, HDSA, 505 Eighth Avenue, Suite 902, New York, NY 10018).
This is an international initiative, with Huntington's Associations in Europe and Australia, and affiliated groups in Russia, China and Japan participating as well.
If you'd like to attend a Rare Disease Event in your area, please visit http://rarediseaseday.us/events/events/ for complete listings.
Thank you for everything you do to bring Help for Today, Hope for Tomorrow to everyone affected by Huntington's disease.