Here are some helpful online support resources.
Chronic Kidney Disease Websites
American Association of Kidney Patients (AAKP)
On the AAKP website (http://www.aakp.org), you can sign up for a kidney disease magazine or email newsletter. You can download a book called Kidney Beginnings: A Patient’s Guide to Living with Reduced Kidney Function. You can also access health tracking tools and ask a doctor questions.
On this government site (http://www.healthfinder.gov), you can find a wide range of information on kidney disease, including its causes, symptoms, and treatment. You can also find information on other conditions that people with kidney disease might have, like heart disease, high blood pressure, and diabetes.
National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)
This site (http://www.nih.gov) is part of the National Institutes of Health (NIH). They conduct and support biomedical research, disseminating research findings and health information to the public. They are part of the U.S. Government, under the Department of Health and Human Services (HHS).
At Kidney School (http://www.kidneyschool.org) learn what to expect and how to be an active partner in your care by choosing among sixteen 30-minute on-line modules. Topics include how kidneys work, treatments, anemia, coping, staying active, vascular access, sexuality and fertility, and others.
Life Options Rehabilitation Program
Life Options (http://www.lifeoptions.org) is dedicated to helping people live long and live well with kidney disease. Visit this site to read or download facts about kidney disease, risk factors, symptoms, frequently-asked questions, and how you can keep your kidneys healthy.
National Kidney and Urologic Diseases Information Clearinghouse (NKUDIC)
Learn about the causes and types of kidney disease and what you can do to stay healthy at (http://kidney.niddk.nih.gov/kudiseases/pubs/choosingtreatment/index.htm). This government site also contains information on clinical trials, data, links, and brochures.
Polycystic Kidney Research Foundation
Visit the PKD Foundation (http://www.pkdcure.org) website to learn about polycystic kidney disease. You can use a patient message board, read tips from other kidney patients and frequently-asked questions, ask for a mailed packet of PKD information, or find a chapter near you.
Websites for Children and Parents
This site (http://www.renalinfo.com) provides information for kids who have kidney disease. It includes an overview of kidneys in health and disease, growth issues, nutrition, lifestyle concerns – like school and dating, the medical team, and resources. A special section for parents is also offered.
National Kidney Foundation (NKF)
Type “kids” or “children” into the search box on the NKF (http://www.kidney.org/patients) website. You will find a kids’ glossary, camp lists, frequently asked questions for parents on topics like bedwetting and nutrition, a kidney cookbook for kids, and information about kids in the yearly transplant games.
Visit the NephKids site (http://cybernephrology.ualberta.ca/nephkids/) to learn how to subscribe to a doctor-moderated email support group for parents of children or teens who have kidney disease. The site also contains information on kidney disease in children and links to kidney disease resources.
Kidney Transplant Websites
The mission of the National Kidney Registry (http://www.kidneyregistry.org) is to save and improve the lives of people facing kidney failure by increasing the quality, speed, and number of living donor transplants in the world.
Every incompatible or poorly compatible living donor in the world will pass through a common registry – 95% of these pairs will find a match in less than six months with the majority being age compatible six antigen matches – extending the functioning life of these transplanted kidneys while simultaneously reducing the deceased donor waiting lists.
Learn about how to become an organ or tissue donor (http://www.organdonor.gov). You can download an organ donor card, read transplant and donor stories, and get answers to common questions about organ donation on this site.
Organ Procurement and Transplantation Network (OPTN)
Operated by the U.S. Department of Health & Human Services, OPTN is a great source for learning more about organ donation and transplantation. You can search for a kidney (or other organ) transplant center using their search tool at: http://optn.transplant.hrsa.gov/members/search.asp.
United Network for Organ Sharing (UNOS)
On the UNOS website (http://www.unos.org), you can learn about transplant issues, read a glossary of transplant terms, learn about what UNOS does and how it was formed, and view press releases and download resources. There is also a long list of frequently asked questions.
Other Important Websites
TAD PGS, Inc. – Employment for Veterans
TAD PGS, Inc. is a wholly owned subsidiary of Adecco Inc., providing human resources solutions to the government sector. TAD PGS Inc. is a company who cares about veterans, their spouses, and dependents. From your first thoughts of transition from the military to civilian employment, there is always uncertainty. TAD PGS Inc. wants to take as much uncertainty out of that process as possible and help you get the job that you want. Veteran’s looking for work should visit their Veterans Resource Center (www.tadpgs.com/TAD-veteran-resource.asp) for more information.