National Kidney Foundation Inc. HQ

NKF Cares is NKF's Patient Information Help Line that offers support through a toll-free phone number and email. Trained specialists provide information, support and resources to people affected by CKD (patients, family members) on a wide variety of topics in English and Spanish

NKF Peers is our free, national telephone peer support program that connects people with CKD (Stage 4, dialysis patients, transplant recipients) with a mentor who has been through a similar experience. NKF's national office trains peer mentors to offer this support. NKF Peers now also offers support for living kidney donors and potential donors.

The Your Kidneys and Your program was developed to raise awareness among the general public and individuals at risk for kidney diseases by educating them about kidneys, risk factors for kidney disease, and what can be done to protect kidneys. Local NKF staff train volunteers to present a short and simple PowerPoint presentation in their community. A short animated video is also available for widespread sharing.

People are waiting for a chance at a better life. The kidney transplant waiting list is getting longer, and in response, the National Kidney Foundation (NKF) has developed "The Big Ask: The Big Give.” This initiative educates and raises awareness about living kidney donation and transplantation among kidney patients, their families, and friends. The Big Ask: The Big Give includes a number of programs and resources to help kidney patients, families and potential donors, including: an extensive website, publications, the opportunity to connect with a patient or living donor mentor through NKF Peers, and referral to NKF Cares for personalized assistance. In addition, NKF is pilot testing interactive workshops for patients and families that will:
• Educate about living donation/transplant
• Provide interactive training and tools about how to find a living donor
• Include follow up from a transplant center to provide ongoing support and refer to NKF resources that can help

NKF convened a Consensus Conference in May 2017 in Baltimore, MD to explore approaches to increase utilization of kidneys that are currently discarded in the U.S. each year. This conference brought together key opinion leaders in organ donation and transplantation, including kidney patients and families, transplant surgeons, nephrologists, organ procurement organization leadership, the federal government, and payers to identify reasons that donated kidneys are discarded, as well as practical solutions to increase utilization of these kidneys.

This conference established a foundation for ultimately increasing utilization of previously discarded kidneys, which will result in improved practice and an increase in the number of kidneys available for transplantation. Action/implementation plans from the conference are in development.

CKDintercept, NKF’s Primary Care Initiative, not only educates healthcare practitioners and patients, but changes the way that healthcare systems, educational institutions, and laboratories understand and respond to CKD. In effect, CKDintercept will bring about a "culture change,” where recognition of kidney disease will be as common as recognition of diabetes and heart disease. This initiative is about maximizing the opportunity presented in primary care to identify people with "hidden” kidney disease and to stop or slow progression. CKDintercept also incorporates a "feedback loop” from patients and other stakeholders to continually inform the program. This requires a broad strategy of targeted, coordinated programs under the CKDintercept umbrella:
CKD Insight: Chaired by Former U.S. Surgeon General Regina Benjamin, CKD Insight is a Summit that brought together key leaders in healthcare to generate a clear, cohesive strategy that will create a roadmap for change that will elevate the national perception of kidney disease and create a culture where early detection is a priority.

CKDinform: This CME/CE activity targeting primary care practitioners (PCPs) includes 3 topics and addresses early identification, diagnosis, and management of chronic kidney disease (CKD). By applying the information and tools from these symposia, PCPs will see an immediate and striking upswing in CKD diagnosis, resulting in better patient outcomes.

Kidney Walk is an inspiring community fundraiser that calls attention to the prevention of kidney disease and the need for organ donation. NKF Kidney Walk is our most successful and popular fundraising program, it is also invaluable in spreading awareness about kidney health and the importance of early detection. About 100 Kidney Walks take place annually, attracting approximately 125,000 walkers, 6000 teams, and over 300,000 donors, ultimately raising millions in urgently needed funds for patient services and programs.

The NKF’s Kidney Advocacy Committee is comprised of 200 patient and family liaisons who are personally affected by kidney disease. These individuals use their experience to advise government agencies, research organizations, and policy and health organizations, including NKF, on matters related to kidney disease. They also provide input on the development of NKF public policy positions and the implementation of kidney disease education programs.

This program builds upon NKF’s Advocacy Action Center – a group of almost 114,000 people who advocate on behalf of kidney patients.

In addition, NKF organizes an annual Kidney Patient Summit in March, selecting individuals from around the country to travel to Washington, DC and be part of a united voice for kidney disease. The Kidney Patient Summit is an opportunity for kidney patients to educate Members of Congress about the different causes of kidney disease, the challenges patients and families face living with kidney disease, and the need for improvements in kidney policy.

NKF has a number of initiatives to promote education, research and innovation:

•Kidney Learning Solutions (KLS), "The Educational Arm of the National Kidney Foundation”, provides hundreds of cutting-edge and innovative educational tools and resources.

•NKF’s "A to Z Guide” is developed by KLS and receives 6.4 million visitors annually. Online professional and patient education is delivered in various formats, including recorded presentations, videos and text.

•Smartphone applications on a variety of kidney health topics are available for both professionals and patients: www.kidney.org/apps.

•NKF also has a kidney "store” with hundreds of print brochures available on various topics to patients and professionals www.kidney.org/store

•The NKF Young Investigator Research Program has invested over $100 million in support to over 1,100 talented researchers investigating the causes and treatments of kidney disease. This focus on beginning nephrology researchers, unique when the program started, continues to strengthen the talent pool working on this growing public health problem.

•The NKF’s CKD Patient Registry will seek to enroll 30,000 – 50,000 patients with CKD Stages 3b-ESRD and is being developed in consultation with a stakeholders workgroup, which includes patients.

•NKF is working on a new $6.7 million project, spearheaded by the University of Michigan, to improve cardiovascular safety in hemodialysis patients. The 5-year project is being funded by the Patient-Centered Outcomes Research Institute (PCORI) and will examine two interventions aimed at reducing cardiovascular risks in patients with kidney failure.

•NKF is a collaborating partner and stakeholder organization on the "Putting Patients at the Center of Kidney Care Transitions,” project by Duke University with Geisinger, along funded by PCORI. NKF will assist with study design and implementation throughout the project, and will provide peer support services through our "NKF Peers” program.

•NKF’s Patient Centered Outcomes Research Stakeholders’ Conference was the first effort to identify kidney disease patient-led national research priorities by bringing together patients, caregivers, stakeholders and academics. The conference was held at the NKF Spring Clinical Meetings in 2017. Attendees identified patient-centered research priorities, challenges and facilitators to acting on such priorities, as well as patient-identified best practice strategies for actively engaging patients in kidney disease research.

•NKF has joined the Patient Focused Medicines Development (PFMD) group to bring kidney patient perspectives on the development of new medicines. PFMD, established in 2015, is an independent multinational coalition designed to bring together initiatives and best practices that integrate the voice of the patient throughout the lifecycle of medicines development, thereby speeding up the creation and implementation of an effective, globally standardized framework.

•NKF launched a new microsite to make it easier for kidney patients to find a clinical trial in their local area within 60 seconds, just by answering a series of questions about their condition. Patients and professionals can go to www.kidney.org/clinicaltrials to directly search for clinical trials. Patients will also find real life stories from clinical trial participants and resources addressing common questions