2017 National Policy Summit

Unite for lupus


The Lupus Foundation of America’s ongoing advocacy work and the efforts of its national network of lupus activists have been critical in the fight against lupus.

Together, we have increased funding for lupus research and education, helped ensure access to quality care, and raised awareness of the disease in the halls of Congress, the White House and around the world. But more must be done, and now is the time.

Join lupus activists from across the country as we unite in Washington, D.C. June 26-27, 2017 for the National Policy Summit: Advocacy In Action. This two-day Summit is an opportunity to:

  • share your story
  • educate Members of Congress about lupus
  • make the case for why more must be done now to advance our cause on Capitol Hill.

 


Schedule of Events

 

Monday, June 26

8:30 am - Breakfast and Registration

9:30 am - Opening Session

10:00 am - Panel One: Accelerating Lupus Research
What are the barriers facing lupus research and drug development, and what is the lupus community doing to overcome those barriers? These are among the questions that will be discussed during an interactive session featuring patient advocates, and leaders from the lupus research community within government, the industry and the private sector. The session will highlight how people with lupus and their families can play a role in overcoming the challenges in lupus research.

  • Susan Manzi, M.D., M.P.H., Chair, Department of Medicine, Allegheny Health Network (Moderator)
  • Monique Gore-Massey, Lupus Advocate
  • Robert H. Carter, M.D., Deputy Director, National Institute of Arthritis and Musculoskeletal and Skin Diseases
  • Michele M. Oshman, Director, Federal Advocacy and Alliance Development, Eli Lilly and Company
  • Janet Woodcock, M.D., Director, Center for Drug Evaluation and Research, Food and Drug Administration

11:15 am - Panel Two: The Role of Federal Agencies in Lupus Research, Education and Awareness
The efforts of lupus activists have led Congress and federal agencies to increase funding for lupus research, education and awareness. This session will update the lupus community on the latest initiatives underway at key government programs, and clearly demonstrate how our advocacy makes a difference. The discussion will also underscore the importance of the Congressional meetings that will take place on day two of the Summit.

  • Jill P. Buyon, M.D., Director, Division of Rheumatology, Department of Medicine, New York University (Moderator)
  • Wendy Rodgers, Lupus Advocate
  • Margaret J. Kaniewski, MPH, Project Officer, Centers for Disease Control
  • Evelyn Lewis, M.D., American Academy of Family Physicians
  • Joseph M. Ahearn, M.D., Director, Asthma Allergy and Autoimmunity Institute, Director, Lupus Center of Excellence

12:15 pm - Luncheon Keynote: Health Care Trends in America
Political analyst Charlie Cook will discuss the state of the healthcare debate in the country and its impact on people with lupus. Cook is the editor and publisher of the Cook Political Report and a political analyst for the National Journal Group. He has served as a political analyst on several major broadcast news networks, and has appeared on Good Morning America, TODAY, Nightline, Meet the Press, and This Week.

2:15 pm - Panel Three: The Promising Pipeline in Drug Development for Lupus
We are in the midst of one of the most exciting times for lupus research and drug development. Currently there are more than two dozen companies investing in lupus research. Join your fellow advocates for this informative session as leaders from the pharmaceutical industry share the latest news about their pipelines to develop the next treatments for people living with lupus.

  • Aurinia
  • Genentech
  • GlaxoSmithKlein
  • Vifor Pharma
  • Cindy Coney, Lupus Advocate
  • Additional pharmaceutical company participants to be announced soon!

3:45 pm - Prep for the Hill Training
What do your Members of Congress need to know? This session will review the priority issues, ways to effectively share your lupus story and how to deliver a loud and clear message during the meetings with Members of Congress on day two of the Summit.  

5:00 pm - Advocacy Awards Reception 
The first day of activities concludes with an evening reception honoring lupus activists and our Congressional champions whose leadership has made a difference in the fight against lupus. 
Note: The Advocacy Awards Reception requires an additional registration fee of $50.

 

Tuesday, June 27

8:00 am - 4:30 pm - Meetings with Members of Congress: 
On day two of the Summit, lupus activists will meet with Members of Congress on Capitol Hill to share their lupus stories and let Congress know first-hand why more must be done in the fight to end this cruel disease. Activists will urge Congress to increase federal funding for lupus research and support policies that not only speed the development of new treatments, but also ensure that people with lupus have timely access to the care they need and deserve.

 


Registration Details

Registration for the National Policy Summit is OPEN. Your registration fee for the National Policy Summit includes refreshments and lunch on June 26, and access to a training session, the panels, speakers, and Capitol Hill meetings. Summit attendees will receive a National Policy Summit bag and other giveaway items.

The early bird registration fee for the National Policy Summit is $50. After May 26, 2017, the registration fee is $75. The Advocacy Awards Reception requires an additional registration fee of $50. Register now.


Hotel Information

The National Policy Summit will be held at Hyatt Regency Washington on Capitol Hill 400 New Jersey Ave., NW, Washington, DC 20001.

The Lupus Foundation of America has secured a room block with discounted rates for event attendees who have completed registration for the Summit. Single/double occupancy rate is $220.00 + tax per night; $245.00 + tax for triple occupancy; and $270.00 + tax for quadruple occupancy. 

In order to receive the discounted rate, please reserve your hotel room no later than May 26, 2017.  During the Summit registration process, you will be given access to a direct link to secure a reservation at the Hyatt Regency.

Reduced room rates are only available for those who already have registered to attend the National Policy Summit.