Alport Syndrome Foundation
The mission of the Alport Syndrome Foundation, launched in 2007, is to educate and support patients and families that have been affected by this genetic kidney disease with the goal of funding research to find more effective treatment protocols and a cure. The website provides information on Alport Syndrome, medical resources, and a forum where patients can communicate with each other based on their experiences.
Phone: (480)460-0621
Email: slagas@alportsyndrome.org
Website: www.alportsyndrome.org
FACT SHEET: Childhood Nephrotic Syndrome
(National Kidney Foundation)
IgA Nephropathy Support Group
A comprehensive and informative website about IgA nephropathy from the perspective of what IgAN patients can expect to encounter throughout the course of their disease, from initial diagnosis to End-Stage Renal Disease (ESRD), and beyond. The focus is on IgAN as conventional treatment. This is the companion information website to a very large and active IgAN discussion forum.
Email: info@igan.ca
Website: www.igan.ca
Kidcomm
This is a resource for families living with childhood nephrotic syndrome, minimal change nephrotic syndrome, FSGS, IGA nephropathy and other childhood kidney diseases.
Website: www.kidcomm.org
They offer online support groups:
The KidComm email group is for parents
KidTalk is an email group for kids with kidney disease
YakTalk is an email group for young adults (kids up to age 18 or 19) with kidney disease
KidTalk2 is for kids and young teens who have brothers and sisters with kidney disease
Lupus Foundation of America (LFA)
LFA is dedicated to finding the causes and cure for lupus.
Phone: (202) 349-1155
Toll-free: (800) 558-0121
Website: www.lupus.org
The NephCure Foundation
The NephCure Foundation is the only organization solely committed to seeking a cause and cure for two potentially devastating kidney conditions, Nephrotic Syndrome and Focal Segmental Glomerulosclerosis (FSGS). NephCure is made up of patients, their families and friends, researchers, physicians and other healthcare professionals joining forces to create awareness and generate funding for research.
Phone: (610) 540-0186
Toll-free: (866) 637-4287
Email: info@nephcure.org
Website: www.NephCure.org
PKD Foundation
The Polycystic Kidney Disease (PKD) Foundation is a worldwide organization devoted to determining the cause, improving clinical treatment, and discovering a cure for PKD. This is the official site of the Polycystic Kidney Research Foundation.
Phone: (816) 931-2600
Toll-free: (800) PKD-CURE
Website: www.pkdcure.org
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