Thank you to Norma G. Cuellar DSN, RN, FAAN for her presentation on Complementary Alternative Treatment. You can listen and vie...
The name change is part of an overall campaign to change the disease name from restless legs syndrome (first description of the disease in t...
- To Drop Incorrect Descriptors. Restless (legs are supposed to move); Legs (other body parts such as the arms and trunk are often involved); Syndrome (we now understand more about the pathophysiology—syndrome indicates only a collection of symptoms)
- Enhance Universal Recognition. Translation into other languages is simplified
- To Increase Disease Awareness. The new name will provide an opportunity to further educate clinicians, research funders, and the public about the seriousness and scope of the disease.
- To Move Away From Negative Connotations. There are other examples such as changing senile dementia to Alzheimer disease (1977); Mongolism to Down syndrome (1965), and leprosy to Hansen’s disease
- To Decrease Trivialization and Ridicule. Many patient advocates and researchers view the existing name as inaccurate and often trivializing of the inherent suffering experienced by those with the disease.
- To Lead and Support the Name Change Process. As the only organization representing the USA and Canadian patient population, we are in a unique position to provide leadership in the consistent use of Willis-Ekbom disease.
- To Provide Leadership in Securing Research Funds. The Foundation will work closely with our collaborative partners at the National Institutes of Health to increase further understanding of the seriousness of the disease and its long-term consequences.
- To Model Positive Behavior. It was Arc, the advocacy organization representing individuals with intellectual and developmental disabilities that changed their name from the Association for Retarded Citizens to just “Arc”. The community actively rejected the label “retard” and took positive steps to eliminate it from our collective vocabulary.
- . To Increase Disease Awareness and Improve Treatments. The new name will provide an opportunity to further our mission to educate clinicians, research funders, and the public about the seriousness and scope of the disease.
If you missed this informative Webinar on the name change, you can still listen and view the recording. The recording of the Webinar is...
Topic: Changing the name from Restless Legs Syndrome to Willis-Ekbom disease: Learn more about the name change and its impact
Speakers: Dan Picchietti, MD of the Foundation's Medical Advisory Board; Georgianna Bell, Executive Director; and Richard Wilson, Support Group Leader
Date Held: Tuesday, February 26, 2013
Powerpoint Slides: RLS to WED Presentation
Powerpoint Slides: Foundation Name Change Presentation
The recording of the Webinar is no longer available. Please contact us at firstname.lastname@example.org about viewing the webinar.
Restless Legs Syndrome Foundation is now the Willis-Ekbom Disease Foundation ROCHESTER, Minn., February 28, 2013 – The Restless Legs...