Organizations and Resources
This page compiles a list of the various sites and resources dedicated to Chronic Kidney Disease. These include national and regional groups and organizations active in the roles of research, outreach, awareness, and general assistance for patients who need help and guidance.
If you know of any groups or resources that you think belong on this list, please let me know.
Volunteer Groups And Organizations
You will find a number of the larger national groups in this list and I’m looking to add any smaller regionally based organizations as I discover them. I recommend looking into the first two organizations (the National Kidney Foundation and American Kidney Fund) as a starting point in your research.
- National Kidney Foundation
Created in 1950, this is a major national group focused on providing services and education to patients throughout all the phases of kidney disease. Like the American Kidney Fund (below), they have an extensive website and sponsor a number of activities throughout the year promoting kidney health.
- American Kidney Fund
Like the NKF listed above, a national group focused on the many facets of kidney disease and also providing an extensive set of resources on their website in terms of educational material and they provide services for those patients facing hardships.
- The Kidney Project
This is, to quote the homepage “ a national research project with a goal to create a small, surgically implanted, and free-standing bioartificial kidney to treat end stage renal disease (ESRD).” In short, this is a fascinating development that is beginning to show some promise. They do need a lot of funding and support to keep this moving though.
- Nephcure Kidney International
Another national group focused on the many diseases that bring about Nephritis such and Minimal Change Disease and FSGS.
- IgA Nephrology Foundation of America
Started by parents of a child who was diagnosed with IgAN, this group puts a lot of focus on the research side of things. IgAN can’t be cured or prevented at the moment, so their goal is to provide the resources necessary for researchers to make strides.
- The United Network for Organ Sharing (UNOS)
UNOS is a private non-profit that manages the transplant list here in the US. Their website contains a wealth on information on organ donation!
- World Kidney Day
Yes, we even have our own day of the year.
These are some medical centers with a focus on nephrology. Once again, contact me with any recommendations to add to the list, as this will grow over time.
- Tufts Medical Center Kidney and Blood Pressure Center
- Mayo Clinic Nephrology and Hypertension
- Beth Isreal Deaconess Nephrology
- Fresenious Kidney Care
- UCSF Health
- John Hopkins Nephrology
The following is a list of social media groups or pages I’ve been following that you may find of interest. It’s a small sample of all the groups that are out there, but these are ones I recommend so far. Reader recommendations are always welcome.
- IgA Nephropathy Foundation Of America (Facebook)
- NephCure Kidney International (Facebook)
- National Kidney Foundation(Facebook)
- American Kidney Fund(Facebook)
Support Groups and Meetups
Do you have a local support group or meetup that is open to new members? Want to see it listed here? Email me to get that done.
Journals and Educational Sites
Periodicals and journals with a focus on kidney health. Some of these will be geared towards patients while others will target the medical professionals.