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Kidney Donor Conversations
Kidney Donor Conversations (KDC) is a 501(c)(3) nonprofit organization with a mission to provide education and support for living kidney donation. Other organizations attempt to find kidneys through the recipient or registering to be an organ donor. But to find enough kidneys for everyone on the kidney transplant waiting list, we must also discover living donors from the general population. Contact KDC for information regarding online presentations, personal support, and resources about the facts, benefits, and process of living kidney donation.
Polycystic kidney disease (PKD) is a rare genetic disease that causes permanent worsening in kidney function. PKD is the most common genetic cause of chronic kidney disease. We initiated “Establishing Meaningful Patient-centered Outcomes With Relevance for patients with PKD” (EMPOWER PKD) with PCORI funding to engage patients with PKD to learn about patient concerns regarding: PKD impact, patient-centered health outcomes, insurability (health and life insurance), and patients’ activation and engagement. We aim to establish patient centered outcomes that are based on the shared priorities of patients with PKD, their families, healthcare providers, researchers and other stakeholders. To do that, we utilized semi-structured focus groups with a pre-piloted guide which allow for conversational flow and consistency. During each focus group, participants used a nominal, multi-voting technique to vote for outcomes which are important to them. We have conducted so far eight focus groups with seven to eleven patients and caregivers, and one group with eight clinical and research experts, each lasting two hours. EMPOWER PKD is bringing together patients with PKD and their families, advocacy groups, researchers, clinical experts, nurses and care coordinators to define patient centered outcomes that are of greatest importance to be assessed in PKD studies. EMPOWER PKD will help shape future research agendas with a focus on the PKD patients and families and their experience.
NephCure’s mission is to empower people with rare, protein-spilling kidney disease to take charge of their health, while leading the revolutionin research, new treatments, and care. Founded in 2000 by a group of committed patient parents, NephCure has invested more than $40 million in kidney disease research and helped create a landscape where there are now new treatments and more than 60 interventionaldrug trials for rare kidney diseases. NephCure is a U.S. tax exempt 501(c)(3) public charity.
The Philippine Nurses Association of Illinois (PNAI)
The Philippine Nurses Association of Illinois, Inc. is a professional, voluntary, non-sectarian, and non-profit organization that is dedicated to promoting the standards and promoting the cultural heritage of nurses from the Philippines.
National Association of Nephrology Technicians/Technologists
NANT promotes education and advances the professional role of the multidisciplinary team in delivering the highest quality of care to the chronic kidney disease (CKD) patient. It provides educational opportunities, represents the nephrology technology professionals in the regulatory and legislative arena, encourages the development of nephrology professionals in leadership roles, and achieves recognition for the contribution of the nephrology technology practitioners to the total care of the CKD patient.
American Nephrology Nurses Association (ANNA)
The American Nephrology Nurses Association improves members’ lives through education, advocacy, networking, and science. Since it was established as a nonprofit organization in 1969, ANNA has been serving members who span the nephrology nursing spectrum. ANNA has a membership of over 8,500 registered nurses and other health care professionals at all levels of practice. Members work in such areas as conservative management, peritoneal dialysis, hemodialysis, continuous renal replacement therapies, transplantation, industry, and government/regulatory agencies. ANNA is committed to advancing the nephrology nursing specialty and nurturing every ANNA member. We achieve these goals by providing the highest quality educational products, programs, and services. Our members are leaders who advocate for patients, mentor each other, and lobby legislators, all to inspire excellence.
OPEN MINDS is the premier market intelligence and management support firm specializing in the sectors of the health and human service field serving consumers with chronic conditions and complex support needs. The mission of OPEN MINDS is to provide health and human service payers and provider organizations – and the organizations that serve them – with the market and management knowledge needed to improve their organizational efficiency and effectiveness.
The American Academy of Nephrology PAs (AANPA) is a non-profit organization founded in 1997. Our purpose is to support the professional growth, development, training, education and networking of PAs within the specialty practice of nephrology.
South Plains Kidney Foundation (SPKF)
The South Plains Kidney Foundation of West Texas (SPKF) is the leading health organization in this area, dedicated to the issues of all renal diseases related to the kidney and urinary tract. The foundation conducts programs in professional education, patient and community services, public education and supports research and organ donation. The mission of the SPKF is to prevent kidney and urinary tract diseases, improve the health and well-being of patients and families affected by these diseases, and to increase the availability of all organs for transplantation.
Cukebook (Culinary Nutrition For Kidneys, Inc.)
Cukebook (Culinary Nutrition for Kidneys, Inc.) is a culinary nutrition platform that gives people with kidney disease the opportunity to thrive. Our Cukebook mission is to make culinary nutrition a mainstay of kidney health. We want Cukebook to be a go-to resource for people who want to learn HOW to cook kidney-friendly and WHY cooking this way impacts their lives positively.
IKONA offers a smarter way for kidney care providers to deliver effective and measurable learning experiences to their patients and staff. Our platform uses learning science, storytelling and immersive technology to address education and training challenges, dramatically improve patient understanding and ensure confident treatment decisions. Together with leading care providers across the country, we are reinventing learning in kidney care, one experience at a time.
Nurse Practitioner Continuing Education (NPACE)
NPACE is a national nonprofit organization that promotes excellence in patient care by providing high quality evidence-based educational programs to nurse practitioners and other advanced practice clinicians in a rapidly changing healthcare environment.
The Polycystic Kidney Disease Foundation
We’re the only organization in the U.S. solely dedicated to finding treatments and a cure for polycystic kidney disease (PKD). We fund research, education, advocacy, support, and awareness on a national and local level. Since 1982, we have proudly funded more than 1,300 research projects and leveraged $1.5B in research funds, making us the largest private funder of PKD research. We fund basic and clinical research, nephrology fellowships, and scientific meetings with a simple goal: to discover and deliver treatments and a cure for PKD.
American Kidney Fund
The American Kidney Fund (AKF) fights kidney disease on all fronts as the nation’s leading kidney nonprofit. AKF works on behalf of the 37 million Americans living with kidney disease, and the millions more at risk, with an unmatched scope of programs that support people wherever they are in their fight against kidney disease—from prevention through transplant. With programs that address early detection, disease management, financial assistance, clinical research, innovation and advocacy, no kidney organization impacts more lives than AKF.
Renal Pharmacy Consultants, LLC
We provide educational seminars, publications, and consultation with organizations regarding medication therapy management of patients with chronic kidney disease.
IgA Nephropathy Foundation (IgAN)
IgA Nephropathy IgAN is an autoimmune disease that attacks the kidneys. It affects how blood is filtered in the small blood vessels of the kidneys. IgAN occurs when an abnormal protein damages the filtering unit (glomerulus) inside the kidneys. It is estimated that 20-40% of the people who have IgAN will develop end-stage kidney disease, which means they will need dialysis or kidney transplantation to survive.
The Kidney Foundation of Central PA
The KFCP was founded in 1979 and became an independent organization in 1981. Currently, the KFCP supports patients in its 28 county service area with a nationally recognized peer mentor program (PFPP), Camp Kydnie (week long sleep overcamp for kids with kidney disease ages 6-19 years), medical jewelry program, blood pressure monitoring device distribution, and community and patient education. It’s mission is summed up in these words: education, advocacy, and support.
At Clean Plates, we will never tell you to go on a diet. Our mission is to make healthy eating easier and more enjoyable, providing readers with all the tools they need to better understand nutrition and health free from the guilt and shame of dieting. No matter the way you choose to eat—whether you’re a conscientious carnivore or a vegetarian, a beginner cook or an expert home chef—we’ve got everything you need to help you eat well, feel great, and enjoy yourself.
By becoming a Supporting Organization, you will receive the opportunity to:
- Promote your organization’s logo and brief description to NephU’s 8,000+ members on the NephU Supporting Organizations page
- Collaborate, develop, and cross promote resources and events
- Submit published articles, resources, or relevant materials to the NephU Resource Library
*Note: Event postings, potential cross promotional materials, interviews, and resources are subject to the legal review process of NephU’s sponsor Otsuka Pharmaceutical Development & Commercialization, Inc (OPDC).
Supporting OrganizationNephU is supported by Otsuka Pharmaceutical Development & Commercialization, Inc. (OPDC) and Otsuka America Pharmaceutical, Inc. (OAPI) - committed supporters of the Kidney Health Community. The information provided through NephU is intended for the educational benefit of health care professionals and others who support care for those with kidney disease and other related conditions. It is not intended as, nor is it a substitute for, medical care, advice, or professional diagnosis. Health care professionals should use their independent medical judgement when reviewing NephU’s educational resources. Users seeking medical advice should consult with a health care professional. No CME or CEU credits are available through any of the resources provided by NephU. Some of the contributors may be paid consultants of OPDC and/or OAPI.May 2020 MRC2.CORP.X.04767
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