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ALR Public Policy

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Since 2004, the Alliance for Lupus Research (ALR) has successfully advocated for greatly increased federal funding for lupus research.

Through the Department of Defense: In 2004, the ALR was successful in in its efforts to have lupus included in the list of diseases funded under the Department of Defense (DOD) Peer Reviewed Medical Research Program. This was the first time that lupus has been included as one of the 23 scientific topic areas covered by this $50-million competitive grant program. This effort has equalled an additional $8-million to lupus research. For more information on these federally-funded projects, please click here.  

Through the National Institutes of Health (NIH): Thanks in part to the ongoing work of our advocates, the NIH, the U.S. Government's largest funder of medical research, has increased its support of lupus research by a projected $41-million! Click here to view the NIH's most recent Research Portfolio.

  

Facts on Lupus*:

  • Lupus hits hardest one of our nation's most medically-underserved populations.
  • While the disease also affects men and children, 90% of all those diagnosed are women in their childbearing years.
  • Women of African-American descent are two-thirds more likely to be diagnosed with lupus. Also particularly vulnerable are women of Hispanic, Asian, and Pacific Islander descent.
  • Lupus costs the nation over $100 billion a year in direct and indirect medical costs.
  • The number of Americans currently affected by lupus is estimated at 1.4 million.

*All statistics from U.S. Department of Health and Human Services.

 

 

 Comments and Feedback

 

Submitted by ruthie at: June 16, 2011
i have lupus and want to join the walk and either start my own campaign or join a organization. please send out more info on this matter lilbit7278@yahoo.com thank you and we all will conquer this struggle with love, faith, belief and GOD!!
Submitted by Peter Saengsutthi at: March 18, 2011
Anything is possible if we try and work together as a whole. There are many people in the world that wish to find a cure for this! Let's all work together guys. Email me at p.saengsutthi@live.com I'm no professional but I want to work together with the world to find a cure. I am willing to dedicate every second of my life to work with this disease until a cure is found.
Submitted by AMO at: November 18, 2010
Please get the word out and educate everyone you know about LUPUS. I am always surprised by the number of people who don't know about LUPUS. They may have heard about it, but only know it is a disease- yet, every person I know, knows someone with it. Email your Congressmen. Be your own healthcare advocate and educate your caretakers and doctors! Give charitable contributions towards scientific research. Research on LUPUS could also help find treatments and cures for other diseases. Donate your time to LUPUS organizations for advocacy and research, whether it be volunteering to be a patient (aka guinea pig) in an experimental study (I have been in 2) or it be begging for money to support the development of treatment protocols. Most importantly, become educated and spread the knowledge.
Submitted by LUPUS Awareness & Research at: September 21, 2010
Please do what you can and SUPPORT LUPUS RESEARCH, every little bit counts. Stay Strong, Awareness Will Lead Us to A CURE! ~Keith
Submitted by Cynthia Latham at: September 10, 2010
Written on September 10,2010 I have Lupus and I will support the cure of Lupus.
Submitted by Mary Ellen Alberto at: May 19, 2010
I have Lupus and I will work and support the cure for Lupus.
Submitted by Rhia at: May 17, 2010
I just made this letter much, much longer with my own battle with Lupus, Raynaud's, MCTD and Sjogren's. I have suffered many,many years well before anyone figured out why might be wrong. Finally, two years ago a very young, very intelligent primary care doctor finally was able to put the things together that got me diagnosed. We finally know what is wrong, and now I am in the fight of my life, to fight for advocacy, research, a possible realm of new medications,possibly a cure, and/or ways to keep from getting these dreadful, uncureable, often mysterious illnesses. Lupus almost took my life only 2 months ago due to severe complications that began with a gallbladder surgery. 7 weeks later, after several surgeries, many, many tests, many medications, including 2 units of blood,a slit in my liver, bile leaking into my abdominal cavity causing fluid around my lungs, my heart, ulcerations within my small intestine, and even another heart attack, I came home so weak I was literally unable to get off the bed or sofa myself to even to go the bathroom. It took me another 6 weeks at least at home to regain any of my strength. I am trying to get a local group together here in my hometown as well as get all I can going to help with research, education, medication, help for the victims, including our caretakers, who are also very much victims of these life altering, and often life taking diseases.
Submitted by Mary at: April 11, 2010
Please support the alliance for lupus research! We need to find a cure. The first step is to lend a helping hand.
Submitted by Al at: January 20, 2010
Please send me more information on Lupus. What works and what does not. A list of doctors in the Seattle, WA area that specialize in Lupus.
Submitted by andrea at: January 11, 2010
let´s fight for a cure! we can do it!
Submitted by Alice Downing at: October 6, 2009
Please continue to support Lupus research, we desperately need the help!
Submitted by Nancy at: October 3, 2009
I have cutaneous lupus and have found very little about it and very few doctors that are aware of it. My dermatololgist told me that I was the worse case he's ever seen but has no answers. It seems like I'm in unchartered waters and everything is trial and error. There needs to be a better plan for treatment. I will e-mail anyone I can.
Submitted by Julie at: October 1, 2009
I have Lupus. How do I become part of the research?
Submitted by Kelly at: October 1, 2009
Dear Lupus research team I really enjoyed walking for a cure for Lupus. I would like to know what I can do to help. My friend Liz has Lupus and I want to know more about Lupus so please keep sending me info about Lupus and let me know how I can help and what to do.
Submitted by Brenda Pone at: October 1, 2009
I concure, research much continue
Submitted by jdudsnow at: September 2, 2009
Congress is back in session next week! Let's hit em hard!
Submitted by Rneeder at: August 21, 2009
I have been an advocate for Lupus Funding for 20 years. I am so glad to see government finally taking a active approach. But we have to keep up the pressure. I won't continue if we don't hold their feet to the fire.
Submitted by Sally at: August 21, 2009
We need more congressional funding for a cure, and we need it now!!!
Submitted by Sam at: August 21, 2009
I just emailed my Congressman! Don't wait another minute, you can too!

 

 

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