Renal Support Network

DEALING WITH CHRONIC KIDNEY DISEASE (CKD) CAN BE EXHAUSTING, BOTH PHYSICALLY AND EMOTIONALLY. THE CENTER FOR DISEASE CONTROL STATES THAT AN ESTIMATED 30 MILLION US ADULTS HAVE CKDOR MORE THAN 15% OF THE US ADULT POPULATION. RENAL SUPPORT NETWORK (RSN) STRIVES TO ENSURE PEOPLE WHO HAVE KIDNEY DISEASE HAVE ACCESS TO QUALITY OF CARE, DIALYSIS TREATMENT CHOICES, KIDNEY TRANSPLANTATION AND PROVIDE THE PATIENTS PERSPECTIVE ON REGULATORY AND LEGISLATIVE ISSUES. RSN PROMOTES THE IMPORTANCE OF ORGAN DONATION AND LIVING DONOR INITIATIVES.IN ADDITION, PSYCHOLOGICAL ADAPTATION TO CKD IS CRUCIAL TO ENSURING OPTIMAL LONG-TERM OUTCOMES. PATIENTS WITH CKD TEND TO HAVE HIGHER LEVELS OF ANXIETY AND DEPRESSION THAN OTHER PEOPLE. IT IS VITAL THAT THEY BE OFFERED APPROPRIATE RESOURCES TO HELP THEM DEVELOP COPING STRATEGIES, INCREASE THEIR PERCEPTION CONTROL AND TO BECOME EDUCATED ABOUT THEIR ILLNESS AND TREATMENT OPTIONS. RSN HAS A LARGE SOCIAL MEDIA AND MAILING LIST FOLLOWING WHO SEEK EDUCATION AND HOPE.

HOPEWEEK: FOR 29 YEARS, RSN HAS HOSTED ITS ANNUAL PATIENT EDUCATION MEETING FOR PEOPLE LIVING WITH KIDNEY DISEASE, ALONG WITH THEIR FAMILIES, AS WELL AS HEALTHCARE PROFESSIONALS AND ANYONE WHO WANTS TO LEARN MORE ABOUT KIDNEY DISEASE. IN 2020, RSN INTRODUCED THIS NATIONAL, VIRTUAL FIVE-DAY EVENT. SPEAKERS INCLUDE HEALTHCARE PROFESSIONALS AND PEOPLE WHO HAVE LEARNED TO LIVE AND THRIVE DESPITE HAVING KIDNEY DISEASE. EACH DAY HAS A SERIES OF PRESENTATIONS THAT FOCUSES ON A SPECIFIC DISEASE OR TREATMENT FOR KIDNEY DISEASE INCLUDING AN ENTIRE DAY DEDICATED TO PEDIATRIC KIDNEY DISEASE. WE HELD THE MEETING IN OCTOBER AND HAD OVER 800 SIGN UPS AT OVER 400 PEOPLE ATTEND. TUESDAY FOCUS ON CHRONIC KIDNEY DISEASE PREVENTION, DELAY PROGRESSION AND TREATMENT, WEDNESDAY FOCUS ON DIALYSIS CARE, THURSDAY FOCUS ON TRANSPLANT, FRIDAY FOCUS ON LIFESTYLE ISSUES, SATURDAY FOCUS ON YOUTH, FAMILY AND KIDNEY DISEASE. HEALTHCARE PROFESSIONALS AND OTHERS IN THE KIDNEY COMMUNITY SHARE THEIR EXPERTISE, ADVICE, AND STORIES. RSN STRONGLY SUPPORTS EQUITABLE ACCESS TO INFORMATION REGARDLESS OF BARRIERS, THEREBY PROVIDING A VIRTUAL PLATFORM FOR THOSE WHO CANNOT ATTEND IN-PERSON DUE TO PHYSICAL, GEOGRAPHIC, OR OTHER CONSTRAINTS, TO BE AN INTEGRAL PART, AND TEACHES ALL ATTENDEES HOW TO BE THEIR OWN HEALTH ADVOCATES. THE EVENT IS MEANT TO BE A SOURCE OF EDUCATION AND INSPIRATION FOR EVERYONE. ALL PRESENTATIONS WILL BE EDITED AND LOADED ONTO OUR WEBSITE.

ADVOCACY AND PATIENT OUTREACH: WE CONTINUE TO FOLLOW AND ADVOCATE FOR THE CHRONIC KIDNEY DISEASE IMPROVEMENT IN RESEARCH & TREATMENT ACT AND THE LIVING DONOR PROTECTION ACT. RSN IS AN ACTIVE MEMBER OF KIDNEY CARE PARTNERS. WE PROVIDE THE PATIENTS PERSPECTIVE IN HIGH-LEVEL ADMINISTRATIVE MEETINGS AND THROUGH OP-EDS. WE HAVE ENGAGED IN QUALITY MEASURES DEVELOPMENT, PENDING REGULATORY AND LEGISLATIVE ISSUES, AND THE IMPORTANCE OF ALLOWING PAYMENT TO ALIGN WITH BEST PRACTICES AND QUALITY MEASURES. WE CONTINUE TO FOCUS ON THE IMPORTANCE OF MEDICATION, DIALYSIS, AND DIETARY ADHERENCE, AND THE BEST WAYS TO PROVIDE EMOTIONAL SUPPORT TO PATIENTS AND THEIR FAMILIES. WE ALSO RAMPED UP OUR ONLINE ZOOM OUTREACH TO ALLOW PEOPLE TO PARTICIPATE. RSN COLLABORATES WITH KIDNEY CARE PARTNERS, THE NATIONAL QUALITY FORUM, KIDNEY CARE QUALITY ALLIANCE, AND SEVERAL ESRD NETWORKS. RSN MEMBERS PARTICIPATE IN COALITIONS THAT WORK TO IMPROVE CKD WELL-BEING AND ACCESS TO CARE. MANY OF OUR MEMBERS HAVE PENNED ARTICLES FOR CJASN TO GET THE PATIENTS PERSPECTIVE ACROSS IN PEER-REVIEWED STUDIES BEING PUBLISHED. WE ENGAGE AND EDUCATE PATIENT ADVOCATES TO PROVIDE THE PATIENT PERSPECTIVE. RSNS HOSTS A SERIES OF TOPICAL ZOOM MEETINGS ARE INFORMATIVE AND SO MUCH FUN! TOPICS INCLUDE THE KIDNEY DIET, EXERCISE, HOBBIES AND MORE. THIS IS A GREAT WAY TO CONNECT WITH OTHERS LIVING WITH KIDNEY DISEASE, MAKE NEW FRIENDS AND LEARN NEW THINGS. THERE ARE NO FEES TO ATTEND.WE ALSO CREATED TOOLS FOR PEOPLE SEEKING A KIDNEY TRANSPLANT. INCLUDING A TRANSPLANT DASHBOARD FOR EASY NAVIGATION OF FINDING A TRANSPLANT CENTER THAT FITS PATIENTS NEEDS. WE ALSO CREATED AN ANIMATED VIDEO SERIES AND A SHARE YOUR SPARE KIT TO HELP PATIENTS BRING UP THE DISCUSSION OF TRANSPLANT IN A FUN WAY.

KIDNEYTALK BI-ANNUAL NEWS MAGAZINE: SINCE 2005, RSNS NEWS AND LIFESTYLE MAGAZINE HAS EDUCATED AND INSPIRED READERS WITH ITS PATIENT-DRIVEN ARTICLES AND STORIES OF HOPE. WE PROVIDE GUIDANCE AND DIRECTION TO AUTHORS WITH CHRONIC KIDNEY DISEASE WHO ARE EXCITED TO SHARE THEIR EXPERIENCES, STRENGTHS, AND WISDOM TO ASSIST THEIR PEERS AND IMPROVE THEIR OWN LIVES. THEY TELL US THEY COLLECT, RE-READ, AND SHARE THE MAGAZINES TIMELESS ARTICLES WITH FRIENDS AND FAMILY. THE PRINTED MAGAZINE IS DISTRIBUTED TO PATIENTS, CAREGIVERS, AND HEALTHCARE PROFESSIONALS TWICE PER YEAR, WITH AN AVERAGE REACH OF 40,000+ READERS. A DIGITAL LIBRARY OF ARCHIVES IS ALSO AVAILABLE ONLINE.