ONLINE RESOURCES
Now you and your family can connect with other PKD patients around the world through blogs, chat rooms, list serves and other websites. Check out the list below of free "online communities" you can join to learn more about PKD.
Note: The PKD Foundation does not control or monitor the information provided in blogs, chat rooms or list serves.
Blogs
- Chronic Positivity
- Cure Our Dylin
- Early Onset PKD
- Heather Oman's blog about living with ADPKD
- Jack's Kidney Adventure
- Julie B: Blog about PKD and her experiences in the Tolvaptan Tempo clinical trial
- Julia Roberts: Blog about her children, Gage and Quinn
- Kidney Postings: Part of the DaVita.com network.
- Kirsten Sclater-Booth: Blog about her son Luke's experiences with ARPKD
-Lydia's "Until There's a Cure" Blog: The blog of a family affected by Polycystic Kidney Disease, told from the perspective of Lydia-the teenager sharing the disease with her Father.
- Lisa's Blog: Living With PKD
- Nathan's PKD blog
- New to PKD: A new patient's experiences with PKD.
- Our Family Whirlwind: A blog about a family with four boys, and a baby with ARPKD.
- PKD for Heather T
- PKD Mom Blog
- PKD: Welcome to My World
- Team Teddy Bear
- A Bryson in China
- Bill's blog: "My blog is not exclusively about PKD, but pkdcure.org is one of my links, and I often post PKD congressional advisories."
Create your own blog about PKD! Visit Blogger or Typepad to start your blog today! Once you’ve created a blog, share it with us by emailing pkdcure@pkdcure.org.
Chat Rooms
- Beth's PKD Chat Room (Wednesdays at 9 p.m. EST)
- POLYCYSTS AOL Chat Room (Mondays at 9 p.m. EST): Email Deb Case for more information.
- Polycystic Kidney disease chat & community
List Serves
- ARPKD Listserve: For anyone who's lives have been affected by ARPKD.
- ARPKDLOSS Listserve: Support for families who have lost children to ARPKD.
- PKD E-mail Support Group List Serve: Send an e-mail message to: listserv@cirs.org. Leave the subject heading blank, and on the first message line, type: "subscribe pkdsupportgroup."
- PKD Care: To be a part of the PKD Care Listserve, email PKDCARE@yahoogroups.com
Patient Resources
- Clinical Trials.gov: Your source for comprehensive information for current clinical trials being conducted nationwide.
- DaVita.com: Kidney disease and dialysis information.
- GeneClinics: Online publication of the University of Washington, provides a disease profile on ARPKD.
- GeneSage: Provides up-to-date human genetic information and resources for consumers and healthcare professionals.
- GeneTests: Promotes the appropriate use of genetic counseling and genetic testing in patient care. Also provides reliable, easy-to-use and current genetic testing information for the benefit of families and their healthcare providers.
- HALT PKD—Polycystic Kidney Disease Treatment Network
- Health 4 Care
- Healthfinder
- Hopeline
- MedicineNet.com: Online healthcare destination for 100 percent doctor produced medical information.
- MEDLINEplus: The National Library of Medicine's MEDLINEplus information pages are designed to direct you to resources containing information that will help you research your health questions.
- NephrologyLinx: A free and easy tool designed to keep nephrology professions and others interested in kidney disease up-to-date with the latest medical developments.
- RxList: The Internet Drug Index
- Transplant Living: Your prescription for Transplant Information
- University of Colorado Health Sciences Center PKD Research Group
- WebMD: A full-service Internet healthcare portal
- Your Genes, Your Health: An easy-to-understand, visual orientation to the genetics of PKD.
Diet and Nutrition
- American Heart Association's Delicious Decisions
- Cleveland Clinic Renal Diet Cookbooks
- Creating a Healthy Menu: A Computer Program Especially for Kidney Patients and for Everyone Else
- Protein Index
- The Renal Family Cookbook
Dialysis
- Davita Patient Citizens: A not-for-profit organization dedicated to improving the quality of life for people with chronic kidney disease and those on dialysis.
- DaVita.com
- DialysisFinder
- Dialysis Outcomes Quality Initiative (DOQI)
- Forum of End-Stage Renal Disease Networks
- Global Dialysis
- Life Options Rehabilitation Program: Resources for professionals and patients with kidney failure
- RenalWEB
Transplant
- Donate Life America
- The Gift of Life Foundation
- TransWeb
- Transplant Recipients International Organization
- United Network for Organ Sharing (UNOS)
- National Foundation for Transplants
Patient Support: United States
- Genetic Alliance
- American Association of Kidney Patients
- American Kidney Fund
- Kidney and Urology Foundation
- National Kidney Foundation
- National Foundation for Transplants
Patient Support: International
- The Australian Kidney Foundation
- The Kidney Foundation of Canada
- Kidney Research UK
- Mutation Database Autosomal Recessive Polycystic Kidney Disease
U.S. Government Websites
- National Institutes of Health (NIH)
- National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)
- Division of Kidney, Urologic, and Hematologic Diseases (DKUHD)
- U.S. National Library of Medicine
- Congressional Kidney Caucus
Professional Organizations
United States
- American Medical Association (AMA)
- American Nephrology Nurses Association (ANNA)
- American Society of Nephrology (ASN)
- American Society of Pediatric Nephrology (ASPN)
- American Society of Transplantation (AST)
- American Society of Transplant Surgeons (ASTS)
- The Renal Physicians Association (RPA)
International
- The Australian and New Zealand Society of Nephrology
- Brazilian Society of Nephrology
- International Society of Nephrology (ISN)
- International Society for Peritoneal Dialysis (ISPD)
- The Renal Association (United Kingdom)
Journals
United States
- Hypertension Dialysis Clinical Nephrology (HDCN): Renal Diseases Electronic Journal
- Journal of Renal Nutrition
International
- Kidney International
- MEDWORLD: Listing of biomedical and clinical journals on-line
Research
- PubMed (Medline)
- Community of Science Funding Opportunities