American Association Of Kidney Patients Inc

AAKP IS DEDICATED TO IMPROVING THE LIVES AND LONG-TERM OUTCOME OF KIDNEY PATIENTS. CONT ON SCH O.

AAKP CENTER FOR PATIENT ENGAGEMENT AND ADVOCACYTHE AAKP HAS BEEN A NATIONAL LEADER IN PATIENT ADVOCACY AND EDUCATION FOR OVER 50 YEARS - AND IS THE LARGEST FULLY INDEPENDENT AND PATIENT-GOVERNED ORGANIZATION IN THE KIDNEY ECOSYSTEM. AAKP IS HIGHLY REGARDED ACROSS THE FEDERAL GOVERNMENT AMONG BOTH CAREER AND APPOINTED POLICYMAKERS AND OUR INFLUENCE IN THE EXECUTIVE BRANCH AND THE U.S. CONGRESS TRANSFERS ACROSS TRANSITIONS AND ELECTIONS CYCLES DUE TO OUR MASSIVE NETWORK OF RELATIONSHIPS AND LONG-HELD REPUTATION AS AN INDEPENDENT VOICE FOR PATIENTS. AAKP BELIEVES THAT PATIENTS AND INDUSTRY MUST BE AT THE TABLE TOGETHER AND ENGAGED AT ALL LEVELS OF DECISION-MAKING WHENEVER THE FEDERAL GOVERNMENT SEEKS TO IMPLEMENT WIDE-RANGING INITIATIVES THAT IMPACT INNOVATION AND SHAPE FUTURE ACCESS

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PATIENT SERVICESAAKP IS DEDICATED TO IMPROVING THE LIVES AND LONG-TERM OUTCOME OF KIDNEY PATIENTS THROUGH EDUCATION, ADVOCACY, PATIENT ENGAGEMENT AND THE FOSTERING OF PATIENT COMMUNITIES. AAKP FIGHTS FOR EARLY DISEASE DETECTION AND APPROPRIATE DIAGNOSIS OF RARE/GENETIC CONDITIONS; INCREASED KIDNEY TRANSPLANTATION AND PRE-EMPTIVE TRANSPLANTATION; FULL PATIENT CHOICE OF EITHER IN-CENTER OR HOME DIALYSIS; PROTECTION OF THE PATIENT/PHYSICIAN RELATIONSHIP; PROMOTION OF RESEARCH AND INNOVATION INCLUDING ARTIFICIAL WEARABLE AND IMPLANTABLE KIDNEYS AND XENOTRANSPLANTATION; AND THE ELIMINATION OF BARRIERS FOR PATIENT ACCESS TO AVAILABLE TREATMENT OPTIONS. AT AAKP, WE1. EDUCATE: PATIENTS & CAREGIVERS ON IMPORTANT ISSUES SO PATIENTS CAN BETTER UNDERSTAND THEIR CONDITION AND MAKE INFORMED DECISIONS ON THEIR CARE OPTIONS WHICH ALIGN WITH THEIR LIFE'S GOALS AND ASPIRATIONS. AAKP IS A RECOGNIZED LEADER FOR PATIENT-CENTERED EDUCATION - CONTINUALLY DEVELOPING HIGH QUALITY, PROFESSIONALLY WRITTEN, EDITED AND REVIEWED MATERIAL.2. ADVOCATE: FOR POLICIES THAT IMPROVE TREATMENT AND EXTEND LIFE FOR KIDNEY DISEASE PATIENTS - ALWAYS DEFENDING PATIENT CHOICE. AAKP HAS BEEN THE INDEPENDENT PATIENT VOICE - ADVOCATING FOR IMPROVED ACCESS TO HIGH-QUALITY HEALTHCARE THROUGH REGULATORY AND LEGISLATIVE REFORM AT THE FEDERAL LEVEL. THE ASSOCIATION'S WORK HAS IMPROVED LONG-TERM OUTCOMES IN BOTH QUALITY OF HEALTH AND THE ABILITY FOR PATIENTS AND FAMILY MEMBERS AFFECTED BY KIDNEY DISEASES TO LEAD A MORE PRODUCTIVE AND MEANINGFUL LIFE.3. DEFINE: "PATIENT ENGAGEMENT" AS A SUBSTANTIVE TOOL TO IMPACT POLICY & HEALTH OUTCOMES.4. COMMUNITY: AAKP IS LEADING THE EFFORT TO BRING KIDNEY PATIENTS TOGETHER TO PROMOTE COMMUNITY, CONVERSATIONS AND TO SEEK OUT SERVICES THAT HELP MAXIMIZE PATIENTS' EVERYDAY LIVES.AAKP OPERATES VIA KEY DISTINCTIVES AND PRINCIPLES: 1. ELEVATE PATIENT VOICE IN NATIONAL ISSUES AND ACROSS DRUG, DIAGNOSTIC AND DEVICE DEVELOPMENT2. PROTECT THE UNIQUE RELATIONSHIP BETWEEN PATIENTS AND THEIR DOCTORS3. EDUCATE PATIENTS AND PRESERVE THEIR ACCESS TO CHOICES AS INFORMED CONSUMERS OF HEALTHCARE4. MAINTAIN FULL INDEPENDENCE IN ALL NATIONAL POLICY AND DECISIONS - NEVER SURRENDER YOUR LETTERHEAD5. HONOR THE PRINCIPLE OF "NO SURPRISES" AMONG TRUSTED ALLIES AND FEDERAL GOVERNMENT OFFICIALS AAKP SERVICES KIDNEY PATIENTS ACROSS THE DISEASE SPECTRUM, INCLUDING THOSE WITH RISK FACTORS FOR KIDNEY DISEASES, INDIVIDUALS WITH EARLY-STAGE KIDNEY DISEASE TO INDIVIDUALS WITH END STAGE KIDNEY DISEASE/KIDNEY FAILURE REQUIRING A FORM OF KIDNEY REPLACEMENT THERAPY SUCH AS DIALYSIS OR A KIDNEY TRANSPLANT. AAKP IS PROUD TO REPRESENT THE LARGEST BASE OF KIDNEY PATIENT CONSUMERS AND THEIR CARE PARTNERS. THE FOLLOWING MAJOR PROGRAMS AND INITIATIVES ARE KEY TO AAKP'S SERVICE TO THE KIDNEY PATIENT COMMUNITY: ASSOCIATION WEB PAGE, ASSOCIATION SOCIAL MEDIA PLATFORMS AND OTHER DIGITAL COMMUNICATION TACTICS, DECADE OF THE KIDNEY, AAKP GLOBAL, PATIENT VOICE PATIENT CHOICE, AAKP ACTION CENTER, AMBASSADOR INITIATIVE (NATIONAL AND INTERNATIONAL), SIGNATURE PROGRAMS (INCLUDING GLOBAL SUMMIT ON KIDNEY DISEASE INNOVATIONS, POLICY SUMMIT, NATIONAL PATIENT MEETING, POLICY ROUNDTABLES), AND EDUCATIONAL PROGRAMMING/RESOURCES.

PATIENT INFORMATION AND EDUCATION AAKP FIRMLY BELIEVES, AS RESEARCH HAS ALSO SHOWN, THAT PATIENT AND FAMILY MEMBER/CAREGIVER EDUCATION IS AN INTEGRAL PART OF TREATMENT AND ENHANCING QUALITY OF LIFE. NOT EDUCATING A PATIENT AND THEIR CARE PARTNER ABOUT THEIR CONDITION AND TREATMENT OPTIONS LEAVES THE PATIENT AT RISK FOR COMPLICATIONS AS WELL AS THE POSSIBILITY OF NOT SELECTING A COURSE OF TREATMENT BEST SUITED FOR THEM. EDUCATION IS A SIMPLE AND EFFECTIVE WAY TO IMPROVE OVERALL HEALTH AND ACHIEVE BETTER OUTCOMES.IN THE SAME VEIN, AAKP IS UNIQUELY POSITIONED TO ENSURE THE PATIENT HAS A CENTRAL ROLE IN RESEARCH AND OTHER ACTIVITIES THAT ARE DESIGNED TO DETERMINE OPTIMAL APPROACHES AND STRATEGIES FOR PROVIDING HEALTHCARE SERVICES, ASSISTANCE PROGRAMS, ACCESS TO NEW PRODUCTS AND SERVICES, ETC. AAKP CONSTITUENTS REPRESENT ALL AGES, MODALITIES, ETHNICITIES, DISEASE STATES, AND A VARIETY OF DEMOGRAPHIC INDICATORS. AAKP'S RESEARCH CAPABILITIES HAVE GROWN RAPIDLY, AND THE ASSOCIATION HAS CREATED A SOPHISTICATED DATABASE AND EXPANSIVE SOCIAL MEDIA CHANNELS WHICH ALLOW AAKP TO BETTER CONNECT AND LEARN FROM ITS CONSTITUENTS. IN TURN, AAKP PROVIDES EDUCATION TO PATIENTS AND CAREGIVERS ON WHAT IT MEANS TO BE INVOLVED IN RESEARCH INITIATIVES AS WELL AS OPPORTUNITIES TO GET INVOLVED. FROM ONLINE SURVEYS, INTERVIEWS, FOCUS GROUPS, AND CLINICAL TRIAL AWARENESS CAMPAIGNS - AAKP IS FOCUSED ON INSERTING IMPORTANT PATIENT INSIGHT AND PREFERENCES INTO RESEARCH TO HELP INFORM INNOVATION, ADVANCE CARE, AND MAKE A MEANINGFUL IMPACT TO IMPROVE LIVES - THIS MEANS AAKP MEMBERS ARE HELPING SHAPE THE FUTURE POLICIES AND DISCOVERIES THAT CHARACTERIZE KIDNEY CARE!AAKP IS KNOWN WITHIN THE RENAL COMMUNITY AS A LEADER IN QUALITY EDUCATION; TAKING TIME TO PRODUCE PROGRAMS AND MATERIALS THAT ARE CURRENT, RELEVANT AND ADDRESS THE MOST PRESSING ISSUES PATIENTS AND THEIR FAMILIES FACE. AAKP IS DELIBERATE IN ITS DEVELOPMENT OF EDUCATIONAL PROGRAMS, WORKING CLOSELY WITH ITS MEDICAL ADVISORY BOARD, HEALTH EDUCATORS AND FELLOW PATIENTS TO CREATE UNBIASED, RELIABLE RESOURCES THAT ARE EASILY UNDERSTOOD AND BENEFICIAL TO PATIENTS. AAKP ROUTINELY USES MATRICES TO MEASURE PROGRAM OUTCOMES TO ASSESS EFFECTIVENESS AND SUCCESS AS WELL AS OPPORTUNITIES FOR ENHANCEMENT. THE AAKP FULFILLS OUR EDUCATIONAL MISSION THROUGH AN EXTENSIVE PATIENT EDUCATION PROGRAM TO INFORM AND EDUCATE KIDNEY PATIENTS, THEIR FAMILIES, AND THE GENERAL PUBLIC ON KIDNEY DISEASES. TO MEET THE NEEDS OF ALL INDIVIDUALS, AAKP OFFERS ITS PROGRAMS IN A VARIETY OF MEDIUMS: PRINT, WEB-BASED AND LIVE (IN-PERSON). AAKP SERVICES MORE THAN ONE MILLION INDIVIDUALS ANNUALLY VIA ITS VARIOUS EDUCATIONAL PROGRAMS AND COMMUNICATION PLATFORMS. AAKP'S BIMONTHLY MAGAZINE, AAKPRENALIFE, AVERAGES MORE THAN 400,000 READERS/VIEWS ANNUALLY AND INCLUDES INFORMATION ABOUT THE LATEST NEWS, EDUCATION, POLICY/LEGISLATIVE ISSUES, INNOVATIONS/RESEARCH OCCURRING IN THE KIDNEY COMMUNITY AND PATIENT/CAREGIVER/LIVING DONOR PROFILES. THE MAGAZINE IS ALSO DISTRIBUTED TO OVER 7,000 DIALYSIS CENTERS NATIONWIDE AND HAS A SUBSTANTIAL AFTERLIFE AS IT REMAINS IN DIALYSIS CENTERS FOR QUITE SOME TIME AFTER MAILING. AAKPRENALIFE IS AVAILABLE VIA PRINT/DIGITAL MEDIUM AND IS ARCHIVED ON WWW.AAKP.ORG FOR A TERM OF ONE YEAR.AAKP'S MONTHLY E-NEWSLETTERS, COLLECTIVELY, WERE DELIVERED MORE THAN 250,000 TIMES DURING THIS YEAR - INCLUDING AAKPRENALFLASH (DESIGNED FOR INDIVIDUALS ON DIALYSIS); KIDNEY TRANSPLANT TODAY (DESIGNED FOR INDIVIDUALS WITH OR INTERESTED IN A KIDNEY TRANSPLANT); KIDNEY BEGINNINGS (DESIGNED FOR AND NEW PATIENTS LEARNING MORE ABOUT THEIR DISEASE; AT HOME WITH AAKP (DESIGNED FOR INDIVIDUALS ON OR INTERESTED IN HOME DIALYSIS THERAPIES) AND AAKP PEDIATRIC KIDNEY PATIENTS (DESIGNED FOR PEDS, ADOLESCENTS AND THEIR FAMILIES). AAKP HOSTS ITS MONTHLY HEALTHLINE AND HEALTHLINE INNOVATOR WEBINAR SERIES FOR PATIENTS AND THE PUBLIC ON TIMELY AND RELEVANT TOPICS SUCH AS MANAGING RISK FACTORS FOR KIDNEY DISEASE (DIABETES/HYPERTENSION); UNDERSTANDING DIALYSIS OPTIONS; KIDNEY TRANSPLANTATION; HOW TO CHOOSE/CHANGE TREATMENT OPTIONS; DIET/NUTRITION; IMPORTANCE OF EXERCISE; COPING WITH A CHRONIC ILLNESS, ADVOCACY AND SOCIAL MEDIA; AND MORE. THESE WEBINARS ARE RECORDED AND MADE AVAILABLE ONDEMAND TO ACCOMMODATE ALL SCHEDULES AND NEEDS AND REACH THOUSANDS ANNUALLY. AAKP HAS EXPANDED THIS WEBINAR PROGRAM TO INCLUDE AN INNOVATOR SERIES, WHICH HIGHLIGHTS THE LATEST RESEARCH AND INNOVATION OCCURRING IN THE KIDNEY SPACE.AAKP UTILIZES A VARIETY OF COMMUNICATION PLATFORMS TO REACH APPROXIMATELY ONE MILLION INDIVIDUALS ANNUALLY. INCLUDED IN THAT REACH IS AAKP'S SOCIAL MEDIAL PLATFORMS: FACEBOOK, TWITTER, LINKEDIN, INSTAGRAM, AND YOUTUBE CHANNEL. AAKP'S WEBSITE (WWW.AAKP.ORG) HAS OVER 420,000-PAGE VIEWS ANNUALLY. THE WEBSITE FEATURES THE AAKP CENTER FOR PATIENT RESEARCH AND EDUCATION AND CENTER FOR PATIENT ENGAGEMENT AND ADVOCACY - INCLUDING:" EDUCATION (CKD, DIALYSIS, TRANSPLANT, CO-RELATED HEALTH CONDITIONS; CAUSES OF KIDNEY DISEASE; RARE DISEASE; NUTRITION); CLINICAL TRIALS/MARKET RESEARCH OPPORTUNITIES; ACTION CENTER (ADVOCACY INITIATIVES; POLICY ISSUES; VOTER REGISTRATION); PATIENT ENGAGEMENT (AMBASSADOR INITIATIVE; SPEAKERS BUREAU; VETERANS HEALTH INITIATIVE; KIDNEYWORKS; SUPPORT GROUPS), PROGRAMS/EVENTS (NATIONAL PATIENT MEETING; CYSTINOSIS SCHOLARSHIP PROGRAM, MEDAL OF EXCELLENCE; POLICY SUMMIT; GLOBAL SUMMIT; PATIENT SAFETY PROGRAM), AND ONLINE STORE TO DOWNLOAD/PURCHASE MATERIALS.NATIONAL AWARDS PROGRAMAAKP'S AWARDS ENCOMPASS THREE MAJOR CATEGORIES. THE FIRST CATEGORY INCLUDES LEGACY AWARDS - AWARDS THAT AAKP HAS EXTENDED TO ORGANIZATIONS AND PROFESSIONALS FOR SEVERAL DECADES. THE SECOND CATEGORY ENCOMPASSES PATIENT ENGAGEMENT AND ADVOCACY AWARDS - AWARDS CREATED OVER THE COURSE OF THE PAST SEVERAL YEARS THROUGH AAKP'S NEW CENTER FOR PATIENT ENGAGEMENT AND ADVOCACY AS A MEANS OF RECOGNIZING THE INCREASED INFLUENCE PATIENTS HAVE ON NATIONAL POLICYMAKERS AND HEALTHCARE DELIBERATIONS. THE THIRD CATEGORY INCLUDES GLOBAL AWARD RECOGNITIONS. GLOBAL AWARD:GLOBAL KIDNEY LEADERSHIP AND INNOVATION AWARDLEGACY AWARDS:PRESIDENT'S AWARD PRESENTED TO AN INDIVIDUAL WHO MADE A LONG-TERM COMMITMENT TOWARD ADVANCEMENT AND EVOLVEMENT OF AAKP'S NATIONAL STRATEGY.SAMUEL J. ORENSTEIN AWARD PRESENTED TO AN INDIVIDUAL WHO CONSISTENTLY RENDERS EXTRAORDINARY SERVICE TOWARD THE ACHIEVEMENT OF AAKP'S GOALS, OBJECTIVES AND NATIONAL STRATEGY. PETER LUNDIN, MD AWARD PRESENTED TO A RENAL PHYSICIAN WHO HAS MADE CONTRIBUTIONS TO THE CARE, WELFARE AND WELL-BEING OF PATIENTS OVER A LIFETIME OF DEVOTED SERVICE.DOMINICK GENTILE, MD MEMORIAL AWARD PRESENTED TO AN ESRD NETWORK THAT HAS DEVELOPED AND MAINTAINED A PROGRAM WHICH HAS SIGNIFICANTLY BENEFITED PATIENTS AND DEMONSTRATED SUSTAINABILITY.KIDNEY PATIENT SUPPORT GROUP OF THE YEARPRESENTED TO A KIDNEY PATIENT SUPPORT GROUP THAT HAS BEEN ACTIVE WITHIN THEIR LOCAL COMMUNITY. THIS SUPPORT GROUP SHOULD HAVE HOSTED COMMUNITY EDUCATIONAL PROGRAMS AND ACTIVITIES TO SUPPORT ITS LOCAL PATIENTS AND RAISE AWARENESS OF KIDNEY DISEASE.PATIENT ENGAGEMENT AND ADVOCACY AWARDS:NATIONAL SOCIAL MEDIA EDUCATION AND ADVOCACY AWARDPRESENTED TO AN INDIVIDUAL AND ORGANIZATION EACH WHO HAS DEMONSTRATED A NATIONAL LEVEL OF EXCELLENCE THROUGH SOCIAL MEDIA TO EITHER EDUCATE OR ADVOCATE ON BEHALF OF KIDNEY PATIENTS AND THEIR LOVED ONES IN THE AREAS OF DISEASE AWARENESS, POLICY ADVOCACY OR THE CREATION OF ONLINE COMMUNITIES. THIS HIGHLY COMPETITIVE AWARD WILL RECOGNIZE EXCELLENCE ON A VARIETY OF SOCIAL MEDIA PLATFORMS AND WILL INCLUDE VIDEO, BLOGGERS AND SOCIAL MEDIA CONTENT AND SITES THAT HAVE GROWN LARGE AUDIENCES THROUGH CREATIVE AND EFFECTIVE USE OF SOCIAL MEDIA. NATIONAL PATIENT ENGAGEMENT AND ADVOCACY AWARDPRESENTED TO AN INDIVIDUAL, ORGANIZATION AND PUBLIC SERVANT EACH WHO ARE RECOGNIZED LEADERS IN THE FIELD OF KIDNEY PATIENT EDUCATION AND ADVOCACY AND WHOSE BODY OF PROFESSIONAL WORK AND COMMITMENT TO ADVANCE THE INTERESTS OF KIDNEY PATIENTS THROUGH POLICY, EDUCATION OR ACTIVISM. NATIONAL JOURNALISM AWARDPRESENTED TO A REPORTER OR JOURNALIST WHOSE WORK IN EITHER PRINT, ONLINE, TELEVISION OR WEB ARENA(S) HAS BROUGHT THE NEEDS AND INTERESTS OF THE KIDNEY PATIENT COMMUNITY TO THE NATIONAL FOREFRONT THROUGH JOURNALISTIC EXCELLENCE. PRESENTED EITHER FOR A SINGLE COMPELLING STORY WITH LOCAL, REGIONAL OR NATIONAL SIGNIFICANCE, OR BODY OF WORK, WHICH OVER TIME HAS INFORMED AMERICANS OF THE CRITICAL NEEDS AND CONCERNS OF THE KIDNEY PATIENT COMMUNITY.