Dr. Anne Louise Oaklander inducted into the Rare Disease Researcher Hall of Fame!
Friday, February 8th, 2013
Dr. Anne Louise Oaklander inducted into the Rare Disease Researcher Hall of Fame!
*Tarlov Cyst Article in the NEJM
New England Journal of Medicine 2/28/13
Rare Disease Day at NIH (RDD@NIH)
On February 28, and March 1, 2013, the National Institutes of Health (NIH) will celebrate the sixth annual Rare Disease Day with a 2-day-long celebration and recognition of the various rare diseases research activities supported by the Office of Rare Diseases Research – National Center for Advancing Translational Sciences (NCATS), the NIH Clinical Center, other NIH Institutes and Centers; the Food and Drug Administration’s Office of Orphan Product Development; other Federal Government agencies; the National Organization for Rare Disorders; and the Genetic Alliance.
Rare Disease Awareness Day
Rare Disease Day is an international advocacy day to bring widespread recognition of rare diseases as a global health challenge. The day is celebrated on the last day of February every year. In 2013, it will be
observed on February 28th.
The Tarlov Cyst Disease Foundation is a Partner with the National Organization for Rare Disorders (NORD) in bringing recognition to the challenges of rare diseases, such as Tarlov/perineural cysts, meningeal
diverticulum, meningoceles and pseudomeningoceles. To see the complete list of NORD partners and to learn more about Rare Disease Day February 28, 2013 visit the NORD website @ rarediseases.org
What is a Rare Disease?
In the U.S.,any disease affecting fewer than 200,000 people is considered rare. This definition comes from the Orphan Drug Act of 1983 and is slightly different from the definition used in Europe. There are nearly 7,000 rare diseases affecting nearly 30 million Americans. In other words,almost one in ten Americans are suffering from rare diseases.
Besides dealing with their specific medical problems, people with rare diseases struggle to get a proper diagnosis, find information, and get treatment. The rarity of their conditions makes medical research more difficult.
Patient-Centered Research:
A Conversation With Anne Louise Oaklander, by PRF Editors on 27 Jul 2012