Life Options

Kidney Data

  • DialysisData.org - Site operated by the University of Michigan Kidney Epidemiology and Cost Center under contract from the Centers for Medicare & Medicaid Services; provides information on clinical measures, methodology for developing the Dialysis Facility Reports (data on each facility), and downloadable DFR data for researchers

  • Dialysis Facility Compare - Government database of dialysis facilities, treatments they provide, and info on how well each dialysis center delivers care and services they provide, patient experiences with dialysis centers, and much more.

  • Scientific Registry of Transplant Recipients - Transplant program-specific reports by organ containing contain information about the candidates waiting for transplant, outcomes on the waiting list, the transplant recipients, the donors, and the outcomes after transplant.

  • United Network for Organ Sharing - Site offers the option to see national, regional, state, or center-specific data by organ.

  • United States Renal Data System - National data system that collects, analyzes, and provides an annul report on chronic kidney disease, dialysis and transplant in the United States

Dialysis access

Dialysis & Transplant Regulations

  • ESRD Conditions for Coverage Regulations published April 15, 2008 that dialysis facilities must meet to be Medicare certified (PDF)

  • ESRD Interpretive Guidance Three column table: a computer identifier tag (“V tag”); text of the regulation; and guidance for ESRD surveyors in interpreting the regulation; navigate using hyperlinks to the page number for the Condition in the Table of Contents

  • Transplant Laws and Regulations Links to laws and regulations, interpretive guidance, and survey process for organ transplant programs.  Medicare Conditions of Participation for organ transplant programs took effect on June 28, 2007. A transplant program is defined as a component within a transplant hospital that provides transplantation of a particular type of organ (heart, lung, heart-lung, liver, intestine, kidney, pancreas including kidney-pancreas).

Employment resources

  • ABILITYAwareness.org - Non-profit organization from by ABILITY Magazine and AbilityJos. The site dedicated to building a world of inclusion for people with health problems and disabilities. THey engage volunteers with health problems and disabilities to build accessible low-income homes

  • ABILITYJobs.com - This is the largest stand-alone resume’ bank for people with disabilities. This site helps companies fulfill affirmative action requirements.

  • ABILITYMagazine.com - Award winning magazine by Time-Warner covers disability issues. Has a mission to provide new insights into individual levels of ability. Ranked in the top 50 magazines in the world.

  • ABLEDATA Assistive Technology Information - Government funded program. Provides info on assistive technology and rehab products. The aim is to help disabled consumers and their care partners, organizations, and professionals.

  • American Association of People with Disabilities - Largest national nonprofit member group in the U.S. that crosses disability lines. Aim is to ensure economic self-sufficiency and political empowerment for millions of Americans with disabilities.

  • Americans with Disabilities Act Home Page (ADA) - Government site by the U.S. Department of Justice. Provide info on the Americans with Disabilities Act and its enforcement. Includes employment, transportation, education, housing, labor, and more.

  • America’s Career Infonet (a division of CareerOneStop) - Links to facts about jobs with wages and employment trends. Learn what education, knowledge, and skills are needed for most jobs. Has employer contacts, profiles for labor markets in each state, and cost of living facts.

  • America’s Job Bank (a division of CareerOneStop) - Lnks to state Employment Service offices and helps people looking for jobs to find openings (not disability specific)

  • America’s Service Locator (a division of CareerOneStop) - Site helps employers and job seekers find services they need at a Career One-Stop Center. Enter a zip code and choose services you want, or call (877) US-2JOBS for help. (Not disability specific).

  • CareerBuilder - Website links to job vacancies, allows posting a resume, shares tips to help in a job search (not disability specific)

  • CareerOneStop - Links for job seekers, workers, business or human resources, students or learners, and workforce professionals. (Not disability specific.)

  • Department of Veterans Affairs Vocational Rehabilitation Services - Vocational education, counseling, and job resources for veterans.

  • Disability Rights Division of the U.S. Department of Justice - Government agency. Works to uphold civil and constitutional rights of all American. The Division enforces federal statutes that prohibit discrimination on the basis of race color, sex, disability, religion, family status, and national origin.

  • Disabled Person - Nonprofit organization that has a job board for people with disabilities

  • DiversityWorking - Helps people find careers with the nation’s leading employers.

  • Employment: A Kidney Patient’s Guide to Working and Paying for Treatment - Info on working, vocational rehabilitation, paying for treatment, disability programs (SSDI and SSI), federal laws that help kidney patients, glossary, resources (PDF). NOTE: Last updated in 2003.

  • Equal Employment Opportunity Commission - Government agency. Enforces civil rights for protected groups, including those with disabilities

  • Federal Employment of People with Disabilities - Government site by the Office of Personnel Management. Helps people with disabilities find federal jobs

  • Heath Resource Center - National Clearinghouse on Postsecondary Education for People with Disabilities. One of 3 clearinghouses for the Individuals with Disabilities Education Act (IDEA).

  • Job Accommodation Network - Information on the American with Disabilities Act, job accommodations, legislation, employment and other resources, EEOC Guidances (fact sheets), and web tools

  • KidneyWorks - Patient advocacy program of the non-profit American Association of Kidney Patients (AAKP) and Medical Education Institute (MEI). Designed to help working-age people with Stage 3-5 CKD— kidney function less than 60%—and help them keep their jobs, health plans income, and quality of life.

  • Monster Board - Access to thousands of jobs worldwide. (Not disability specific)

  • National Business & Disability Council - Free service helps people with disabilities find jobs.

  • National Federation of the Blind Job Listserv - Private listserv to connect blind people with jobs and jobs with blind people.

  • National Federation of the Blind Resources for Working - Info on employment and resources to help people who are blind and visually impaired.

  • NTI@Home - Job opportunities for Americans with disabilities who need home-based work.

  • Office of Disability Employment Policy - Government site. Resources for work, housing, health, education, transportation, income support, community life, and civil rights for people with disabilities.

  • Rehabilitation Services Administration - Has oversight over state vocational rehabilitation (VR) agencies, includes links.

  • Social Secuirty Work Site - Government site. Info on the Ticket to Work progam, with links to info for people with disabilities and services providers (employment networks and vocational rehabilitation agencies).

  • Social Security Disability - Government site. Describes federal disability benefits programs for adults and children, how to qualify, the process, laws that protect people with disabilities, and more.

  • Ticket to Work (people with disabilities) - Info on the Ticket to Work program for people with disabilities ages 18 through 64 who want to work. Includes webinars, tutorials, contacts for job coaching, job counseling, training, benefits counseling and job placement.

  • U.S. Commission on Civil Rights - Federal agency. Investigates discrimination claims, suggests policies, and acts as an information clearinghouse. Has info on how to file a discrimination claim.

  • USAJobs - Government site. Lists employment opportunities in the federal government.

Financial Resources

Insurance Resources

Journals and Publications

  • Advances in Chronic Kidney Diseases - Bi-monthly journal with articles related to the early identification, prevention or delay in progression of kidney disease; multidisciplinary case management of patients, organ effects of kidney disease; epidemiology and outcomes research; primary treatment methods, dialysis and transplantation; technical aspects of treatment; care of the critically ill patient with kidney failure in the intensive care setting; new therapies for kidney failure; and health care research in chronic kidney disease

  • American Journal of Kidney Diseases - Monthly journal includes articles on applied physiology, dialysis/chronic uremia, hypertension, urology, pathology, and transplantation

  • American Journal of Nephrology - Bi-monthly journal that presents topics in basic science and reports of experiments and reviews of timely topics by experts

  • Clinical Journal of the American Society of Nephrology - Monthly journal of the American Society of Nephrology with papers on clinical topics

  • Hemodialysis International - Quarterly journal of the International Society of Hemodialysis with papers on clinical and experimental topics related to dialysis; publishes the Annual Dialysis Conference supplement

  • Hypertension, Dialysis, Consultative Nephrology (HDCN) - Subscription-based info service with articles, abstracts, and lectures; archived items are in Free Zone; KEY Zone has recent lectures, articles, etc.

  • Journal of Nephrology Social Work - Semi-monthly Journal of the Council of Nephrology Social Workers available to CNSW members of NKF

  • Journal of Renal Nutrition - Bi-monthly journal of the Council on Renal Nutrition available to CRN members of NKF

  • Journal of the American Society of Nephrology - Monthly journal of the American Society of Nephrology with papers on dialysis, transplant, research

  • Kidney International - Monthly journal of the International Society of Nephrology with articles on transplant, nephrology, research

  • Life Options archived newsletters - Newsletters for patients and professionals published from Jan/Feb 1999 to June 2009 on a wide variety of topics

  • Nephrology Dialysis and Transplantation - Monthly international journal of the European Renal Association-European Dialysis and Transplant Association with papers on clinical and laboratory research in nephrology

  • Nephrology News & Issues - Monthly magazine for health care professionals with recent news and articles about kidney disease and treatment

  • Nephrology Nursing Journal - Bi-monthly journal of the American Nephrology Nurses Association

  • Nephron Clinical Practice - Monthly journal with reviews/mini-reviews on up-to-date-topics, second opinions, case studies of genetic interest

  • Peritoneal Dialysis International - Bi-monthly journal of the International Society of Peritoneal Dialysis

  • PubMed (also called Medline) - National Library of Medicine database containing abstracts and some full text journal articles

  • Renal Fellow Network - Blog written by and for renal fellows with near daily teaching topics

  • Seminars in Dialysis - Bi-monthly publication focusing exclusively on cutting-edge clinical aspects of dialysis therapy

  • Seminars in Nephrology - Bi-monthly publication provides scholarly review articles (1 topic per issue) focusing on subjects of current importance in clinical nephrology and related fields

  • Transplantation Proceedings - Publication of the multiple international transplant societies and includes topics on world transplantation biology and medicine; published 10 times a year

Kidney Data

  • DialysisData.org - Info on clinical measures, methods used for the Dialysis Facility Reports (data on each dialysis clinic, and downloadable data for researchers.

  • Dialysis Facility Compare - This Medicare database of dialysis facilities, treatments they provide, and how well each center delivers care and services. Includes patient experiences with dialysis centers, and much more.

  • Scientific Registry of Transplant Recipients - Transplant program-specific reports by organ. Has info about candidates waiting for transplant, outcomes on the list, recipients, donors, and outcomes after transplant.

  • United Network for Organ Sharing - National, regional, state, or center-specific data by organ.

  • United States Renal Data System - Collects and analyze chronic kidney disease, dialysis and transplant in the United States.

Kidney-Related Disease Education

  • Diabetes - Explains causes, symptoms, risk factors, and treatments for diabetes.

  • Explore Transplant & Living Donation - Training seminars to help professionals educate patients and their loved ones about transplant and living donatio. Includes videos and materials for patient education.

  • Goodpasture Syndrome - Covers pulmonary-renal syndrome; a group of acute illnesses that can damage the lungs and kidneys.

  • HealthyPeople.gov - Government site. Science-based, 10-year national objectives to improve Americans’ health. Webinars and info on health disparities. Search for “kidney”.

  • Hemolytic Uremic Syndrome - Info on causes of HUS, who can get it, sign & symptoms, diagnosis, treatment and complications, including kidney damage/failure.

  • Home Dialysis Central - Info on planning ahead to maintain your lifestyle by choosing a type of dialysis you can do at home. Learn what, how, and where on this site. Read articles, blog posts, message boards, use tools. MANY resources for patients and professionals.

  • High Blood Pressure & Kidney Disease - What kidneys do, how high blood pressure affects kidneys, symptoms, diagnosis. Learn how to prevent or slow progression of kidney disease. Info on clinical trials.

  • Iga Nephropathy - Info on Berger’s disease, which occurs when IgA deposits build up in the kidneys, causing inflammation that damages kidney tissues.

  • Kidney & Urology Foundation - Patient and professional resources. Includes physician referrals, scholarships, emergency grants, a library of health information, and more.

  • Kidney Glossary - Defines terms you may encounter when you get care for kidney disease.

  • Kidney School - Free kidney learning center. Sixteen 30-minute modules cover topics from treatment options to nutrition, coping, and sexuality and fertility. Visit live to create a personal action plan, download PDFs, or listen to audio read by kidney patients. CE credits for professionals at credits.meiresearch.org

  • Lupus & Kidney Disease - Info on who gets lupus, how common it is, symptoms, tests, treatments, diet, and complications.

  • MedlinePlus - Government site. Info about health topics, treatments, drug information, and more.

  • Medullary Sponge Kidney - Info on this birth defect, in which sacs that form in the kidney cause the kidney to look like a sponge and keep urine from flowing. MSK is rarely a cause of kidney failure.

  • National Diabetes Education Program - Government site. Education for patients and the public on diabetes.

  • National Kidney and Urologic Diseases Information Clearinghouse (NKUDIC) - Government site. Info about kidney and urologic diseases for patients, families, health care professionals, and the public.

  • National Kidney Disease Education Program (NKDEP) - Info for patients, professionals and the public on kidney disease.

  • National Kidney Foundation - Info on kidney disease,prevention, organ donation and transplants, patient and professional resources. Also find clinical practice guidelines, advocacy, kidney disease screenings, and links to local NKF offices.

  • National Kidney Foundation A to Z Guide - Full text versions of many of the most popular NKF booklets for patients and professionals.

  • Nephron Information Center - Nephrologist run site. List of dialysis clinics, education. Kidney Disease e-mail discussion group for pre-ESRD patients, dialysis and transplant patients, and professionals. Has a page on “Issues in Dialysis” and a calculator to find the eGF. Also has industry news, journal articles, links.

  • NIDDK - Kidney Disease - Government site. Info for patients and professionals in English and Spanish. Offers links to organizations and journal references on kidney disease.

  • Organ Procurement and Transplant Network (OPTN) Patient Education - Government site. Links to ino on transplant, such as a comprehensive guide, patient brochures, resources. Also has a helpline for general questions about transplant.

  • Polycystic Kidney Disease - Info on this genetic disorder that causes cysts to grow in the kidney (and perhaps liver and brain.)

  • Professional Education Resource Center - Resource center for professionals CEs to improve patient outcomes. Includes topics by renowned faculty.

  • Renal Artery Stenosis - Info on narrowing of one or both renal arteries, the vessels that carry blood to the kidneys. RAS causes high blood pressure that can damage kidneys.

  • RenalWeb - Dialysis topics, discussion boards for patients and professionals, “yellow pages” for suppliers, chat, advocacy for dialysis care reform.

  • The NephCure Foundation - Info and research seeking the cause and cure of nephrotic syndrome and focal segmental glomerulosclerisis (FSGS). Advocacy alerts.

  • UNOS Transplant Living - Helpful info for people interested in transplants. Includes info for pediatric patients,living donation, and support groups, under “Community”

  • YourKidneys.com - DaVita website. Info from medical experts, message boards, kidney disease education, health tools, and patient resources

Non Kidney-Specific Resources

Online Pateint and Partner Support

Patient Organizations

Professional Organizations

Scholarships

  • Carolyn Wilson Dialysis Patient Scholarship Program - Financial support up to $5,000 per person per year for people with end stage renal disease living in AR, LA, or OK.

  • Culpepper Exum Scholarship - Two $1,000 scholarship per year for people on dialysis or a kidney recipient to attend an accredited educational program. One award is for a MO resident, and one is for a KS resident.

  • Department of Education - Info on student loans and grants, including loan foregiveness, deferment, cancelling student loans, etc.

  • Indiana Donor Network Scholarships - IN Donor Network staff members contribute money each year to fund scholarships for family members of IN organ and tissue donors, living donors, transplant recipients, people waiting for organs and their family members.

  • Isabelle Christenson Memorial Scholarship - Aawards a scholarship to a transplant candidate, recipient, or donor, or a family member.

  • Joseph DiMartino Scholarship Award - Two $500 scholarships as a one-time grant award to one graduating high school senior and one adult dialysis or kidney transplant patient who shows courage, strength, determination, generosity of spirit, and kindness. Must live in one of these NY Counties: Allegany, Cattaraugus, Chautauqua, Chemung, Erie, Genesee, Livingston, Monroe, Niagara, Ontario, Orleans, Schuyler, Seneca, Steuben, Wayne, Wyoming, or Yates.

  • Kidney & Urology Foundation Patient Awards & Scholarships - National scholarships in different amounts for patients, family members, or professionals of different ages with kidney disease.

  • Kidney Dialysis/Transplant Association Scholarships - $500-$1,000 scholarships for CT, ME, MA, RI, VT kidney patients (including donors) in or close family members. Amounts vary from year to year.

  • Legacy of Life Scholarship - The WRTC (Washington Regional Transplant Center) awards $14,000 in scholarship to high school seniors in their part of VA: Arlington, Fairfax, Loudoun, Prince William, Stafford, and Fauquier counties, and cities of Alexandria, Falls Church, Fairfax, Manassas, and Manassas Park. Also, MD: Montgomery, Prince George’s, and Charles counties.

  • Organ Donation Scholarship Opportunity for High School Seniors - Scholarship to promote organ and tissue donation as an important social responsibility while helping NM youth with higher education.

  • Peter and Bruce Bidstrup Memorial Scholarship - Scholarships for dialysis and kidney transplant patients in AZ.

  • The Jessica Beth Schwartz Scholarship - $2,500 scholarships yearly to transplant recipients under age 25 who are a senior in high school or at a 2 or 4 year college, university, or trade/technical school. Must live in the Gift of Life Donor Program (OPO) service area: Eastern half of PA, Southern NJ, or DE.

  • Transplant Support Organization - Offers a scholarship to a student in a TSO supported school in NY who develops or takes part in an educational or public service effort relating to organ, eye and tissue donation.

  • UAA Alaska Kidney Foundation Scholarship - Scholarships to prepare new nurses to provide safe and effective care to people with chronic kidney disease in Alaska. Award amount is a minimum $1,000 per academic year.

Staying Active

  • Corporation for National & Community Service - Serve.gov is managed by a federal agency charged to promote volunteering and national service in the U.S. Aims to expand the impact of existing groups by engaging new volunteers in their work and encourage volunteers to develop their own “do-it-yourself” projects.

  • Exercise: A Guide for People on Dialysis - Chapters include: Why Exercise? Who Can Exercise? What Kind of Exercise Do You Need? Getting a Good Start; Developing Flexibility; Developing Muscle Strength; Developing Endurance; Making Exercise Part of Your Life; How to Make an Exercise Plan; and Where to Get More Information

  • National Center on Health, Physical Activity and Disability - NCHPAD helps people with a disability and other chronic health problems feel better by taking part in physical and social programs. These include fitness and water fitness, recreation, sports, use of adaptive equipment, and more. Provides tailored info, referral, and consultation to people with a disability, carers, and others online and through health communication.

  • Staying Active with Kidney Disease - Kidney School Module 12 includes: why activity is important, barriers, causes of fatigue, symptoms of anemia and depression, sleep problems and tips for better sleeping, types of exercise, how to become active and stay active, and more.

  • VolunteerMatch - Connects millions of people with a great place to volunteer and helps organizations better use volunteers to create real impact.

Surveys

  • CES-D 10 Survey - Self-reported depression scale

  • Dialysis Patient Satisfaction Survey - Patient satisfaction survey for in-center and home patients

  • In-Center Hemodialysis CAHPS - Patient experience of care survey, survey protocols, and approved survey vendors

  • KDQOL Complete - A web-based system to score, report, and manage KDQOL-36™ survey answers and assess patients’ health-related quality of life; also includes patient education information, based upon individual survey results

  • Kidney Disease Quality of Life Survey - The Kidney Disease Quality of Life survey assesses health-related quality of life of people with ESRD; this site has the longer KDQOL-1.3™ and the 36 question KDQOL-36™; Excel or SAS for scoring

  • Pediatric Quality of Life Inventory - Generic Pediatric Quality of Life Inventory (PedsQL) survey assesses health-related quality of life for children; child self-report (ages 5-7, 8-12, 13-18); parent-proxy report for (kids ages 2-4, 5-7, 8-12, 13-18); ESRD module

  • PHQ Survey - The PHQ is a self-administered version of the PRIME-MD, contains the mood (PHQ-9), anxiety, alcohol, eating, and modules in the original PRIME-MD; the GAD-7 is a brief scale for anxiety

  • PROMIS - PROMIS® (Patient-Reported Outcomes Measurement Information System) is a set of person-centered measures that evaluates and monitors physical, mental, and social health in adults and children; can be used with the general population and with individuals living with chronic conditions

  • SF-36, SF-12, and SF-8 Quality of Life Surveys - Generic self-report survey measuring domains of physical functioning, role limitations-physical, bodily pain, general health, vitality, social functioning role limitations-emotional, mental health

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