| |
NewswireToday - /newswire/ -
Buffalo, NY, United States, 03/20/2010 - The Lupus Alliance of America, a National non-profit organization has designed and released a National Lupus Survey in order to gather statistics on those living with lupus.
|
| |
As you know, the word LUPUS may be more widely known today, thanks to Dr. House, but what it is, how it affects those living with it and how it has been ignored, misunderstood and generally overlooked by the public, has not really changed.
With over 1.5 million Americans who suffer from lupus, we are pleased to finally see the attention we have long dreamed of. From garnering special focus at the National Office of Women`s Health and the Office of Minority Health, to National Awareness campaigns, more research on lupus, and the development of new medications to treat lupus, those living with the disease are more encouraged than ever before. But more work is yet to be done.
To further the dream of greater public awareness, much needed government support and diligent research into the cause, cure and treatment of lupus; the Lupus Alliance of America, its Affiliates and Long Island C.W. Post have designed a voluntary survey to help gather statistics to assist them in achieving those goals.
This survey consists of 38 questions, will take approximately 30 minutes and can be completed by anyone with lupus, as well as parents of children with lupus. You will not receive any direct benefits for participating; however, the empirical knowledge gained from this study will contribute to the scientific understanding of the population of people living with Lupus. The results from this survey, which will be analyzed with the assistance of faculty and members of Long Island University C.W. Post Campus, who will be donating their time and expertise, will help the Lupus Alliance of America learn what people with lupus are in need of and gather data that will help spread awareness about lupus and how it effects those who have it. The Lupus Alliance of America (lupusalliance.org) will gain updated statistics to use when speaking to Congress about funding for lupus research, and will help them obtain local, state and federal resources for patient education, awareness, research and advocacy programs.
The online survey can be found by following the link on the Lupus Alliance of America website. If you do not have access to the Internet you can call the Lupus Alliance for a paper copy of the survey at 866-415-8787, or e-mail them at info[.]lupusalliance.org. Findings from this survey will be made available via the Lupus Alliance of America website, newsletters, public service announcements and sponsoring research institutions.
|
jcvp[.]lupusalliance.org 
