American Association of Kidney Patients | The Independent Voice of Kidney Patients Since 1969™

National Patient Meeting Sept. 23-25, 2016 Nashville Airport Marriott Nashville, TN

On behalf of the American Association of Kidney Patients (AAKP), we would like to invite you to participate in our National Patient Meeting!!! The City of Nashville and its kidney advocates welcomed AAKP with open arms in 2015 so we are very pleased to return in 2016 and build on the success and momentum of last year’s program. The AAKP National Patient Meeting will showcase new and emerging technologies and treatments for current and future kidney patients. For 2016, AAKP will once again draw from our powerful national network to make certain patients hear directly from policy-makers and government decisionmakers whose daily actions impact the life and health outcomes of kidney patients. Our meeting will offer world class expertise and practical knowledge from medical professionals, leading researchers and key executives from government, the pharmaceutical industry, device manufacturers and fellow non-profit organizations. For more information on this program, please call AAKP at (800) 749-2257, option 7, ext. 2 or 5. To register online, visit www.aakp.org/patient-meeting-registration.html.

We look forward to seeing you in Music City!

Paul Conway President, AAKP Board of Directors Transplant Recipient

2

LOCATION Nashville Airport Marriott 600 Marriott Dr. Nashville, TN 37214 DATES The AAKP Registration Booth is open on Sept. 22 from 1:00 p.m. - 6:00 p.m for early check-in. Meeting is Sept. 23-25. ROOM RESERVATIONS Make your hotel reservations now! Rooms at the Marriott are available for only $145 per night for single and double occupancy. To make reservations, call the hotel at (800) 228-9290 or (615) 889-9300 and identify yourself as an AAKP Meeting Attendee to receive the preferred rate. Please make your reservations as early as possible as the meeting hotel has sold out in past years. Deadline to receive the preferred rate ends August 31, 2016 at 5:00 p.m. CT. AIR TRAVEL Southwest Airlines: Southwest Airlines is proud to offer AAKP meeting attendees a discount on travel to and from the Nashville International Airport (BNA) on flights booked April 1, 2016 through Sept. 7, 2016 for travel between Sept. 21 - 27, 2016. An 8% discount is available for Business Select and Anytime fares and a 2% discount for Wanna Get Away fares. Bonus Rapid Rewards Points are also

available when adding your Rapid Rewards account # to your flight reservation. To make reservations, visit www.swabiz.com and enter Corporate Code: 99227192. To enroll in Southwest’s Rapid Rewards Program, visit www.southwest.com/ corporaterapidrewards. While Southwest Airlines is our preferred air travel carrier, attendees are encouraged to check fares and availabilities of other airlines. 3

GETTING TO THE HOTEL Directions from Nashville International Airport (BNA): Hotel direction is approximately 4 miles NW. Shuttle Service: Complimentary hotel shuttle service is available to the Nashville Airport Marriott from the airport. The hotel shuttle is located on Level 1 and runs from 7 a.m. - 11 p.m., every 15 and 45 mins past the hour. There is also a hotel shuttle courtesy phone located on Level 1. The Hotel Shuttle is also available to transport guests from the hotel back to the airport from 4:30 a.m. - 11:30 p.m. every 30 minutes. Taxi Service: Estimated taxi fare from airport is $25 (one way). PARKING: Parking at the Nashville Airport Marriott is complimentary. DIALYSIS: DaVita; Dialysis Clinic, Inc. and Fresenius Medical Care Patient Travel Services are providing dialysis treatments for those needing this service. Attendees are solely responsible for scheduling and paying for their dialysis treatments. Please be advised, scheduling for facilities is based on availability. Attendees requiring dialysis are encouraged to make their arrangements prior to Aug. 31 and MUST identify themselves as an AAKP Meeting Attendee when making arrangements. 4

For registered meeting attendees using DaVita; Dialysis Clinic, Inc.; or Fresenius Medical Care Patient Travel Services; transportation to and from dialysis from the meeting hotel (Nashville Airport Marriott) is provided by AAKP. If an attendee misses the provided transportation to their dialysis treatment, the attendee is responsible for finding and paying for their own transportation to and from the dialysis facility. AAKP can only guarantee transportation for patients who make their dialysis appointments by contacting one of the providers listed and are assigned to the dialysis units selected for AAKP meeting attendees. Each dialysis provider will provide patients with a detailed schedule of their dialysis appointment including the specific time and location to meet the transportation shuttle.

DaVita Customer Care Representative, Terry Spence, (855) 744-6852 Dialysis Clinic, Inc. Lynn Lewis, MSW at (615) 327-3984 or Kay Kerby, MSW at (615) 832-0761 Fresenius Medical Care Patient Travel Services Shamilya James, (866) 434-2597 x5455 Peritoneal Dialysis and Home Hemodialysis supplies can be shipped directly to the hotel. Label boxes with guest name and “AAKP Patient Meeting Attendee Medical Supplies.” The Nashville Airport Marriott is waiving all hotel fees for attendee medical supply boxes. To ensure you will not be charged, please label boxes appropriately. AAKP is not responsible for any charges for mislabeled boxes. CONTINUING EDUCATION CREDITS: Approximately eight Continuing Education (CEs) credits will be available for social workers, dietitians and registered nurses pending approval from the accrediting agencies. For additional information please contact AAKP at (800) 749-2257, option 7 or visit www.aakp.org/ community/programs-events for information on CE credit approval. 5

*PRE-MEETING WORKSHOP* HAVING YOUR DONOR FIND YOU! AAKP is pleased to partner with the Living Kidney Donor Network, a national non-profit organization, to host a hands-on workshop HavingYourDonorFindYou! This interactive program will be held just prior to the start of the AAKP Meeting, on Sept. 22, 2016 from 1:00 p.m. – 3:30 p.m. at the Nashville Airport Marriott. Space is limited, register today by contacting Harvey Mysel, Founder LKDN, at [email protected] or (312) 473-3772. There is no fee to attend this program, this program is not part of the AAKP meeting or AAKP meeting registration. NASHVILLE TOURS ARE BACK! Back by popular demand, AAKP is partnering with Grayline Tours to offer two exciting excursions for convention attendees on the evening of Friday, Sept. 23. Space is limited and is secured on a first come, first reserved basis. A minimum number of individuals needed for each tour to take place. To reserve your spot today, contact Valerie Gonzalez at (813) 400-2395. Tour reservations will only be accepted by phone and must be paid separately from the AAKP meeting registration. Tours will pick up and return registrants at the Nashville Airport Marriott. Grayline Tours is providing a special 10% discount on all other tours, when booking, provide promotional code “AAKP”.

6

Nashville City Tour on a Trolley ($25/person): Enjoy a Customized City Tour of Nashville to include: Nashville’s most famous landmarks, such as the Historic Downtown District, Honky Tonk Highway, River Front, Tennessee State Capitol, Bicentennial Mall State Park, the Parthenon, Vanderbilt University, The historic Ryman Auditorium also known as the “Carnegie Hall of the South”, Country Music Hall of Fame, RCA’s Studio B and Music Row. Trolley is ADA compliant; please advise if you have special needs when making your tour reservation. Tour takes place Sept. 23, 5:00 p.m. – 7:00 p.m. Nashville City Nights Tour on a Trolley ($49/person): A visit to Music City would not be complete without a tasty dinner at local barbeque joint, Jack’s BBQ

(dinner included in cost of tour, dinner includes option of chicken/turkey, a side and beverage). After dinner, soak in the beauty of this historic city with an evening tour that includes Historic Riverfront Park, the Ryman Auditorium, Schermerhorn Symphony Hall, The Country Music Hall of Fame and Museum, the State Capitol, Bicentennial Mall, LP Field (home to the Tennessee Titans), The Parthenon in Centennial Park and much more. You will then have free time to explore on Broadway. Trolley is ADA compliant; please advise if you have special needs when making your reservation. Tour takes place Sept. 23, 5:00 p.m. – 9:00 p.m. *SPECIAL PERFORMANCE* DURING AWARDS BANQUET Jimmy Smith, semi-finalist on season 12 of American Idol, will perform live during AAKP’s Award Banquet on Saturday, Sept. 24. A social worker for Dialysis Clinic, Inc. by day and a musician by night, Jimmy’s soft-spoken, southern style comes through in both his work and musical passion. Sing and dance the night away as Jimmy features some of his personal favorites from the Eagles, Fleetwood Mac and Keith Urban as well as shares some of his own songs.

7

AAKP MEETING AGENDA Black - General Session / Blue - Breakout Session A / Green - Breakout Session B TIME

EVENT / SESSION THURSDAY, SEPTEMBER 22

1:00pm-5:00pm

Registration Open: Beat the lines and register early!

AGENDA

FRIDAY, SEPTEMBER 23

8

8:00am-4:00pm

Registration Open

8:00am-9:15am

Exhibit Hall & Wellness Center Open (Continental Breakfast Provided) The exhibit hall features kidney-related companies that offer products and services important to you! Also stop by the Wellness Center to stay in tip-top shape.

All Day

Social Media Center (FREE WiFi) Blog, Tweet and Post about your convention experience in real time!

9:30am-9:45am

AAKP’s Welcome: The Kidney Community, AAKP and You Teri Browne, PhD, MSW, NSW-C, Convention Chair and Paul Conway, AAKP President welcome attendees to this year’s meeting.

9:45am-10:45am

Keynote Speaker & Special Presentation: “How to be an Empowered Patient” Learn what it truly means to be empowered and be the leader of your healthcare team from a renowned leader in the kidney community, whose nephrology practice has one of the nation’s best outcomes in home dialysis, in-center dialysis and pre-emptive transplantation.

10:55am-11:50am

General Session: KidneyWorks The AAKP and Medical Education Institute (MEI) share a joint interest in helping people with kidney disease understand the benefits of continued employment and are partnering to develop KidneyWorks™. This program will promote job retention for continued health insurance, income, and enhanced quality of life.

12:00pm-1:30pm

Lunch with the Experts (Boxed Lunch Provided) See page 15 for a list of table topics.

1:45pm-3:00pm

General Session: The Life Cycle of Medications & Emerging Treatments Every wonder how a new drug is created? Learn what it takes to develop a new treatment from concept to clinical trials to your local pharmacy and what new therapies are on the horizon.

3:00pm

Close of Day Announcements Stick around to learn what’s on the agenda for the following day.

3:00pm-4:30pm

Exhibit Hall & Wellness Center Open Visit the meeting vendors and stop by the Wellness Center to stay in tip-top shape.

5:00pm

Evening on your own or Nashville Bus Tours: City of Nashville Tour Attendees required to pre-registration for optional bus tour, space is limited! Call (813) 400-2395 to reserve your spot. (Minimum number of registrants required for each tour) SATURDAY, SEPTEMBER 24 Registration Open

8:00am-9:30am

Exhibit Hall & Wellness Center (Continental Breakfast Provided) Visit the meeting vendors and stop by the Wellness Center to stay in tip-top shape.

All Day

Social Media Center (FREE WiFi) Blog, Tweet and Post about your convention experience in real time!

9:45am-10:35am

General Session: The Power of the Patient Voice: Changes to the Five Star Rating System The Centers for Medicare and Medicaid Services (CMS) launched its Five Star Rating System for dialysis centers. Learn what this program is, what it means to you and how patients are playing an intrigue role in shaping the quality measures.

10:45am-11:35am

General Session: Under the U.S. Capitol Dome: Current Issues Impacting Your Healthcare Learn about the latest policy and legislative issues that are hot topics in the kidney community, why you should care and how to make sure your voice is heard.

11:40am-1:30pm

Exhibit Hall Open & Wellness Center (Grab ‘n’ Go Boxed Lunch Provided) Visit the meeting vendors and stop by the Wellness Center to stay in tip-top shape.

1:45pm-2:35pm

Breakout A: The Impact of Social Media – Making Your Voice Heard & Sharing Your Story Social media is giving individuals a platform to make a difference in ways never possible before. Get hands-on training on how to be an effective social media expert! Complimentary WiFi available during session.

1:45pm-2:35pm

Breakout B: The Importance of Exercise in all Stages of Kidney Disease Exercise is an important part of staying healthy - physically and mentally. Learn how to incorporate an exercise program into your daily routine that’s appropriate for you.

2:45pm-3:35pm

Breakout A: Is Home Dialysis Right for You? Learn from healthcare professionals and patients about all the benefits of dialyzing at home to determine if this treatment option is right for you.

2:45pm-3:35pm

Breakout B: Life after Transplant: The Physical, Emotional and Social Impact Having a successful transplant is certainly life-changing, but then what? Many people wonder… am I still considered a patient? Do I have to continue to change my diet? What if I get sick? Are there any side effects from the immunosuppressants that I should be aware of? Learn directly from healthcare professionals and transplant recipients on life after a transplant.

3:45pm-4:35pm

Breakout A: Making Dialysis Safer for Patients Learn about the CDC’s role is providing safety recommendations implemented by CMS and about the organizations new project on patient safety, expanding its educational outreach beyond healthcare professionals to patient population.

AGENDA

8:00am-4:00pm

9

3:45pm-4:35pm

Breakout B: Making a Difference Today for a Better Tomorrow – Advances in Transplantation Learn how AAKP is partnering with key organizations in the kidney community to identify and overcome barriers to living donation.

4:45pm-6:00pm

Exhibit Hall & Wellness Center Open Visit the meeting vendors and stop by the Wellness Center to stay in tip-top shape.

7:00pm-9:00pm

Annual Awards Banquet (Dinner provided) Join us for an evening dedicated to honoring those who have made a significant difference in the kidney community, helping advance the AAKP mission and improve the lives of patients. A special performance by former American Idol Contestant Jimmy Smith! Social Worker by day, Musician by night!

AGENDA

SUNDAY, SEPTEMBER 25 8:00am-12:00pm

Registration Open

All Day

Social Media Center (FREE WiFi) Blog, Tweet and Post about your convention experience in real time!

8:00am-9:30am

Exhibit Hall & Wellness Center Open (Continental Breakfast Provided)

9:45am-10:45am

General Session: Food Fight – Make the Most Out of Your Daily Eats Chef Duane was on the brink of dialysis when he decided to fight back with his culinary skills, drastically reversing his end stage kidney disease. Learn how committing to a kidney friendly diet may help you too!

10:50am-11:50am

General Session: The Future of Kidney Disease Research – Patient and Family Involvement Medical research is an important way to improve kidney disease care. The Patient-Centered Outcomes Research Institute (PCORI) provides exciting opportunities for patients with kidney disease (and their families) to be part of this research. This presentation will talk about ways you can get involved in medical research, and AAKP members will discuss a PCORI project they are working on that is testing a new model of kidney patient care.

11:50pm-12:00pm

Closing Remarks Lead by AAKP President, Paul Conway; the AAKP team and leadership will say farewell until 2017!

*Agenda is subject to change.

10

WHY YOU SHOULD ATTEND THE AAKP NATIONAL PATIENT MEETING I’ve had Chronic Kidney Disease since I was in my 20’s and suddenly in my 60’s, I was diagnosed with End Stage Renal Disease. What a blessing it was when I found AAKP. The website was filled with the information I needed, and I eagerly attended my first convention in 2005.It was encouraging to interact with the other attendees and learn how they managed their condition. With the information I learned from attending these yearly patient meetings, I managed to avoid dialysis for three years until I received a kidney transplant seven years ago.

Attending the AAKP National Patient Meeting opened my eyes to the awareness of others suffering with kidney disease and that I was not alone. It educated me on what kidney disease is, how to live with this condition and the most resent treatment options available to me to maintain a heathy life while on dialysis. The meeting also empowered me to live a quality life, be the CEO of my body and to work alongside with my doctors and health care team.

Linda Umbach, San Francisco, CA

Janice Starling, St. Petersburg, FL

There is no doubt in my mind that the AAKP National Patient Meeting is beneficial, it provides the ideal opportunity for kidney patients, regardless of modality, to interact with other patients to share their experiences, their successes as well as the roadblocks they’ve had to overcome. It also provides patients the forum to learn about the various products that they may be using in their treatment of their disease from vendors. Most importantly, the AAKP National Patient Meeting provides that catalyst for all of us to go back to our respective locales and energize other patients to take an active role in their care.

There is so much hope, information and camaraderie in being with others! If you or a family member has been diagnosed with kidney disease, or you’re a professional in the field, one of the best things you can do is attend the AAKP National Patient Meeting. It’s an opportunity to speak directly to experts in the field, learn about new treatments, and make new friends and contacts. Hope, motivation and understanding are key elements. The best part, though, is the caring attitude every single person receives at the conference. Suzanne Ruff, Mooresville, NC

Shakur Bolden, Jacksonville, FL

11

MEETING PACKAGE The Meeting package includes entrance into the exhibit hall, educational sessions, an attendee tote-bag, souvenir items, and all social events including: three breakfasts, two lunches, afternoon breaks and one dinner. The deadline to register for a package is Sept. 1. Any registrations postmarked after Sept. 1 are subject to a $25 late fee. On-site registrations are also subject to a $25 late fee. AAKP cannot guarantee a tote bag to individuals registering late or on-site. AAKP is pleased to offer discounts for AAKP Life Members and early registrants. Please see registration costs to the right. Register online at www.aakp. org/patient-meeting-registration.html or contact (800) 749-2257, Option 7, Ext. 2 or 5, with any questions or to register over the phone.

12

COST

Patient/Family Members Early registration, on or before June 30.......................... $99 General registration, on or after July 1............................... $150 AAKP Life Member registration, anytime .............................................. $99

Health care Professionals (includes physicians, social workers, nurses, dietitians, etc.): Early registration, on or before June 30........................ $199 General registration, on or after July 1............................... $250 AAKP Life Member* registration, anytime............................................... $99

*Life Members are individuals who have paid $1,000 toward their Life Membership. If you have questions regarding your membership status, please contact AAKP. LUNCH WITH THE EXPERTS Lunch with the Experts is included in all full Meeting Registration Packages! Lunch sessions are available Friday. On the second page of the registration form, please select your top three lunch table choices. Table assignments are handled on a first-come, first-reserved basis. HELP SUPPORT THE AAKP! By making an additional contribution to AAKP, your name is listed in the program book as a supporter of the AAKP National Meeting.

AMERICAN ASSOCIATION OF KIDNEY PATIENTS REGISTRATION FORM Registrations postmarked after Sept. 1 are subject to a $25 late fee.

REGISTRANT 1:

REGISTRANT 2:

Name___________________________________________________________________ Address_________________________________________________________________ City, State__________________________________________ Zip _________________ Phone__________________________________________________________________ Cell phone_______________________________________________________________ E-mail__________________________________________________________________ Will you be shipping HHD or PD medical supplies to the hotel? o Yes o No Will you require in-center dialysis during the meeting? o Yes o No (see p. 4 for info) Are you: o CKD/Not on dialysis o In-center Dialysis o Home Hemodialysis Patient o Peritoneal Dialysis Patient o Transplant Recipient o Family member/Friend

Name______________________________________________________________ Address____________________________________________________________ City, State_____________________________________ Zip _________________ Phone_____________________________________________________________ Cell phone__________________________________________________________ E-mail_____________________________________________________________ Will you be shipping HHD or PD medical supplies to the hotel? o Yes o No Will you require in-center dialysis during the meeting? o Yes o No (see p. 4 for info) Are you: o CKD/Not on dialysis o In-center Dialysis o Home Hemodialysis Patient o Peritoneal Dialysis Patient o Transplant Recipient o Family member/Friend

BEST VALUE

MEETING PACKAGE REGISTRATION

(Includes entrance into the exhibit hall, educational sessions, an attendee tote-bag, souvenir item, and all social events including: three breakfasts, two lunches, afternoon breaks and one dinner)

Cost: o Patient/Family Members: Early registration, on or before June 30................... $99 General registration, on or after July 1.......................$150 AAKP Life Member registration, anytime......................................... $99

o Health care Professionals

(includes physicians, social workers, nurses, dietitians, etc.): Early registration, on or before June 30.................$199 General registration, on or after July 1.......................$250 AAKP Life Member registration, anytime......................................... $99

ADDITIONAL ITEMS

Total Meeting Pkg Fees:________________ HELP SUPPORT THE AAKP (As a supporter, your name will be listed in the Program Book) Donation amount _____________________________________ Please use the lines at right to print the name(s) as you would like them to appear.

TOTAL REGISTRATION FEES

ONE-DAY REGISTRATION

(Only check if you are NOT registering for the full package. One Day Registration includes educational sessions and admission into exhibit hall only. Meals, souvenir item and tote bag are NOT included) Cost: o Patient/Family Members o Health Care Professionals

____ person(s) @ $75 per day ____ person(s) @ $125 per day

Please indicate which date(s) you will be attending:

o Friday, Sept. 23 o Saturday, Sept. 24 o Sunday, Sept. 25

Total One-Day Registration Fees:_________

Total Patron Listing Fees:_______________ Total Fees:___________________________

Payment: o check (payable to AAKP) o Visa o Mastercard o AMEX o Discover Account #:______________________________________________________________ 3 or 4 Digit Security Code _______________Exp. Date: ________________________ Name as it appears on the card: _____________________________________Authorized Signature:___________________________________________________________ Please see Cancellation Policy on page 8 for cancellation rules. Please mail completed form and payment to AAKP or fax to (813) 636-8122, Attn: National Meeting Registration, 14440 Bruce B. Downs Blvd., Tampa, FL 33613

LUNCH WITH THE EXPERTS REGISTRATION FORM

Lunch with the Experts is included in all full Meeting Package Registrations. Please select your top three table topics from the list on the next page. Please list your table choices in order of preference - “Preference 1” being your first choice. Each lunch table accommodates only nine individuals. Tables are assigned on a first-come, first-reserved basis. We will try our best to fulfill your top table request, but cannot make your reservation without a completed registration form and payment. If your selections are no longer available, an AAKP staff member will assist you in selecting an alternative table.

REGISTRANT NAME

FRIDAY SELECTIONS Select topics 1 - 30 from list on next page.

Registrant 1:

(print name)

Preference 1:______________________________________________________ ____________

Preference 2:__________________________________________________________________

Preference 3___________________________________________________________________ Registrant 2:

(print name) Preference 1:__________________________________________________________________

Preference 2:__________________________________________________________________



Preference 3___________________________________________________________________



14 14

LUNCH WITH THE EXPERTS SESSIONS 1. The Hidden Ps: Potassium and Phosphorus 2. Food Facts: Understand the food nutrition label 3. How do I manage a kidney-friendly diet? 4. Medication Management: Understanding when and how to take your medications and potential interactions with certain foods 5. Can I Slow the Progression of Kidney Disease 6. Advancements in Home Hemodialysis 7. Advancements in Peritoneal Dialysis 8. Understanding Nocturnal Dialysis…Could this option be right for you? 9. Changing Therapies: In-center Dialysis, Home Hemodialysis and Peritoneal Dialysis 10. How to Avoid Infectious Diseases 11. Choosing to Stop Dialysis Therapy – It’s an Option 12. How to Find a Living Donor: Learn to Share Your Story 13. Understanding the New Kidney Allocation System 14. Benefits of a Living Kidney Donation 15. How do I become a Living Kidney Donor? 16. Social Media and Living Kidney Donation 17. The Transplant Process: Costs to expect and how to find funds 18. Can I avoid dialysis and get a kidney transplant? 19. My body has a level of antibodies (sensitized), can I ever get a kidney transplant? 20. Cancer in Post-Transplant Patients 21. Managing Depression in Kidney Disease 22. Employment and Kidney Disease 23. Learn more about Clinical Trials and how to become involved 24. Become an Advocate: Understanding Public Policy and How You Can Make a Difference 25. Mastering Social Media as a Patient Advocate 26. Is life insurance important for me? 27. Understanding social security benefits 28. Fit Tips: The importance of exercise at all stages of kidney disease 29. Learn how to start a support group in your local community! 30. The Caregiver’s Corner

15 15

Non-Profit Organization U.S. Postage PAID Tampa, Florida Permit No. 3891

American Association of Kidney Patients 14440 Bruce B. Downs Blvd. Tampa, FL 33613

We look forward to seeing you in Music City! www.AAKP.org | Follow us on Facebook (www.facebook.com/kidneypatient) and Twitter (www.twitter.com/KidneyPatients)