Polycystic Kidney Disease Links

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Links were last updated Sept., 2004

Polycystic Kidney Research Foundation (PKRF) Foundation created by people who had PKD for the purpose of funding research and getting info out to the public. This site has a listing of Friend Groups (by state) which are support groups for PKD with emphasis on trying to raise money to help fund research grants. The PKRF send out a newsletter with the latest developements on PKD to their members 5 times a year. The PKRF also prints booklets about Adult and Recessive PKD. My favorite is the Q&A on PKD booklet where actual questions from people with PKD are used. If you call them, they will send you a free newsletter and information packet on their organization. The ph.# is 1-800-PKD-CURE.

The University of Colorado PKD Research Group Has description and listing of current research studies for PKD, sign up on thier mailing list to be notified of future studies, also lists researcher and recent publications.

Johns Hopkins Kidney Their transplant program has procedures that can help people go ahead with a transplant when there's not a good match because of different blood types or a person developing antibodies to foreign tissue. They also have a program letting people who have a donor that's not a good match swap donors with someone else in the same situation.

HALT PKD Clinical Research and Studies Established to test interventions that may be effective in slowing kidney growth in patients suffering from PKD. A high blood pressure study will start recruiting in late 2004.

The Institute - free or low cost scripts Government site where you can order information booklets about free or low cost prescriptions and hospital care.

HDCN-- Highlights of the 10th Annual Conference on PKD, June 19-21, 1999. Includes "Polycystic Kidney Disease: The Basics" and "Extrarenal Manifestations of Polycystic Kidney Disease" which you can read or listen to. You do have to register with HDCN but it's free for this area.

ARPKD/CHF ALLIANCE Site designed as a resource for patients, caregivers and professionals of Autosomal Recessive PKD(ARPKD) and Congenital Hepatic Fibrosis (CHF).

Needymeds.com Lists programs by many different drug companies to help people who can't afford thier prescription drugs.

Kidney School This isn't specific to PKD, but includes modules on how the kidneys work, anemia, kidney tests, ect. that coould be helpful to someone with PKD.

RxList - The Internet Drug Index Site where you can look up information about the drugs you are taking.

The Feline PKD FAQ Cats, unfortunately, can also have PKD. Persians seem to be very subseptible but breeders are trying to find out which cats have PKD and not breed these animals anymore so the incidence of PKD should be much lower in a few generations. I know this isn't about people but it is a very well done site.

WebMD A site where you can find medical information about many conditions. They have a message board for those with kidney failure that has many knowledgable regulars on it. There is also a chat room for kidney failure that has a registered nurse who has scheduled chats where you can ask questions. You do have to join WebMD to use it but it's free.

PKD SUPPORT GROUP mailing lists are a list serve which is an email re-mailing system. Email messages you send to the listserve address are automatically rerouted to all subscribers who can then take part in email conversations with the whole group or individuals. This has been very helpful to me in learning about specific problems, experiences, and medications that people with PKD have dealt with. I really think anyone with PKD would benefit from joining this group.

Polycystic Kidney Disease (PKD) Access Center This is the main home page of the person who is writing the PKD Tutorial. It has a listing for support groups, PKD links, glossary, and also an overview of the kidney. You should probably look over this page before going to the PKD Tutorial.

The PKD Tutorial (New Horizons Press) This is still a work in progress but is going to be "The Site" when it done. There is a lot of useful information already with good graphics of the kidney and its labeled parts and info about PKD. Keep checking back on this one.

Medscape This site is geared to medical professionals but doesn't require that you are one. You do have join but I just clicked on "Other - medical professional" and had no problem. They don't ask for credentials. I think it just hasn't occurred to them that ordinary people would be interested.
This site has links to medical journels, articles from journels by medical grouping (ex. urology, neurology), case studies, etc.

KID_COMM and Nephrotic Syndrome Homepage A group of parents of children who have various kidney diseases who communicate with each other and share news, problems & experiences via an automatic email list. There is also a mailing group just for children who have kidney disease.

The United States Renal Data System (USRDS) is a national data system which collects, analyzes, and distributes information about end-stage renal disease (ESRD) in the United States. This is where to go to find statistics about transplant success rates, how well people do on dialysis, etc. You do have download some software to read their reports but it's provided for free.

Nephron Information Center This is a great site. It has working diagrams of how the kidney works, information on low protein diets for kidney patients and the tests you should have to moniter your health, Links to nephrology groups and journels, Quizzes on pre-ESRD and ESRD, virtual dialysis, and transplant information. Definitely one of the best sites I've seen on any thing to do with the kidney!

Online Mendelian Inheritance in Man databaseMedical search engine where you can type in Polycystic Kidney Disease to find articles on research or studies about this disease.

PubMed-Medline Search Pubmed is maintained by the National Center for Bio technology Information. PubMed searches Med Line and others for relevant reports. Just type in Polycystic Kidney Disease and hit search. Over 4000 entries currently found at this time.

Renal Diet Menu Maker Free program by Raymond and Audrey Sorensen (who were faced with having to learn about an end stage renal failure and/or dialysis diet) to help you plan daily menus which will provide you with the proper number of calories and amounts of protein, sodium, potassium, phosphorus, and other nutrients that you need, and to allow you as much variety as possible.

The National Institute of Diabetes, Digestive and Kidney Disorders This has a few database you can search and scientific links to their labs and funding links for researchers. Also has current news releases.

NIDDK's PKD Page General fact sheet on PKD.

Renal Net Has links to different sites having to do with kidney disease.

Polycystic Kidney Disease: An Unrecognized Emerging Infectious Disease? This is a very technical and hard to read but intriguing article about PKD being a possible infectious disease (if you're genetically subseptible) that I feel was thought provoking.
The part I really found interesting was that researchers found bacterial endotoxin from fungus which normally isn't found in the kidney in the cysts of all the people with PKD. In large quantities this can cause pain and for people to go into shock. They theorize this might be why leaking cysts are painful. Hopefully, they'll do some more research on this topic!

The Kidney Foundation of Canada Provides information about differnet types of kidney disease(including PKD) and related material, such as pre-dialysis diet, transplants, living with kidney failure, etc.

Web Sites by People with PKD

Bridget's PKD Community Bridget is trying to create a community of people with PKD who can share hope and information with each other. You don't need to join the community to use the message board but do for the chat room (it's free). If you have hotmail, you can use your name and password to get in.

PKD Community Community was created because she (teenager with ARPKD) felt a person who has this disease should talk about it. You can e-mail or icq her if you'd like to talk. You do need to join to use the chat room but she's holding chat meetings 3 times a week. Also has a PKD message board and some religious links.

Glenn Foley Wings Foundation Web site of football play Glenn Foley whose mother and an older brother have PKD. This foundation is trying to help raise awareness of PKD and money for PKD research. It tells his mother's story of having PKD and her eventual kidney transplant from her husband. You can also ask his mom Sue questions about PKD and see other's questions.

Cecilia Maida's PKD Public Awareness Page Cecilia Maida is traveling around the country with her dog Max to increase public awareness about PKD. She's already done many local and some national interviews.
The Polycystic Kidney Research Foundation is currently helping her set up a drive-a-thon to help with her expenses if you'd like to help.

Polycystic Kidney Disease, a personal story experience of someone who was diagnosed with PKD and polycystic liver disease in the U.K. and who helped create the Polycystic Kidney Disease Charity there after having trouble finding information in her own country.

EuroPKDFriends A website for those with PKD in Europe. It has many links for PKD, dialysis, ect., message boards and a chat room with times that are probably much more convenient for those not in the U.S.

Iowa PKD Forum To help support those with PKD in Iowa.

PKD Web Group For Teens Started by a teen with PKD in Ohio for teens to talk to each other using e-mail or instant messenger.

PKD.com Website from someone in Belguim who's close to a person with PKD. It has message boards, chat room and links.

Mary Elizabeth's Home Page Home page devoted to PKD and organ donation.

Linda's PLD polycystic liver disease support group Web site for those with severe liver cysts usually with PKD as well. Has message board, a list serve, and links.

PKD Diet Gives information on an alkaline diet for PKD. This is something the person who writes the web page has tried and it does have some science behind it but isn't embraced by the medical community.
Some doctors have prescribed alkalizing agents for PKD since it's shown promise in slowing cysts growth in rats with PKD but it hasn't been proven in people. Since this (alkalizing agents) is much less of a life style change than making a major change in your diet, doctors seem more comfortable with trying this.
If you want to try this diet, make sure you discuss it with your doctor. Most foods that are alkalizing are fruits and veggies which can have too much potassium and other minerals for someone with very low kidney function.