Nephrotic Syndrome Support Resources

NephCure is your one-stop shop for information and resources on Nephrotic Syndrome and FSGS!

Support Groups:

• NephCure’s Online Chat Group- NephSpace – https://nephcure.org/connect/nephspace/
• Nephkids – http://cybernephrology.ualberta.ca/nephkids/
• Kidcomm – http://www.kidcomm.org/

Facebook Groups
Adults

• Living with FSGS and NS – https://www.facebook.com/groups/366135126743166/
• FSGS Fight Club for Adults-https://www.facebook.com/groups/FSGSfightclubforadults/
• Nephrotic Syndrome in Adulthood- https://www.facebook.com/groups/454099794645940/

Parents

• Parents of Children with Nephrotic Syndrome – https://www.facebook.com/groups/12886179658/
• Nephrotic Syndrome in Kids – https://www.facebook.com/groups/1380027928908119/
• FSGS Fight Club for Parents of children with FSGS and NS – https://www.facebook.com/groups/194765020620959/

Teens/Young Adults

• Kidney Strong – https://www.facebook.com/groups/459938557484438/

Sources of financial help for patients:

• American Kidney Fund: http://www.kidneyfund.org/patient-grants/ 
• National Kidney Foundation: www.Kidney.org
• NIDDK: http://kidney.niddk.nih.gov/kudiseases/pubs/financialhelp/
• Patient Advocate Foundation: http://www.patientadvocate.org/ – resources for copays, coinsurance, and medical debt.
• NORD Patient Assistance Program: http://www.rarediseases.org/patients-and-families/patient-assistance
• Applying for Disability: https://nephcure.org/livingwithkidneydisease/support-resources/applying-for-disability/ 

Social support for children:

• The Children’s Kidney Foundation  http://www.thechildrenskidneyfoundation.org
• Frost Valley YMCA Summer Camp: A Retreat for Children with Kidney Disease
• Camp Sunshine: A Retreat for Children with Life-Threatening Illnesses and their Families
• Round Up River Ranch.org – A week long renal patient camp each summer
• The Ruth Gottscho Kidney Foundation  http://gottschokidney.org/

General Information:

• The National Kidney Disease Education Program (NKDEP): Has a lot of information that is informative for patients.

http://www.nkdep.nih.gov/ 

• Glomerular Filtration Rate: 60 or higher is in the normal range. Find out what this number means to you.

http://www.nkdep.nih.gov/patients/kidney_disease_testing.htm
http://www.nkdep.nih.gov/resources/ExplainingGFR.htm  

• NKDEP provides a calculator for professionals to use. Share it with your doctor and/or nephrologist if they don’t know about it already.

http://www.nkdep.nih.gov/professionals/gfr_calculators/  

• Kidney transplant:

www.transplantliving.org
www.kidneylink.org

1-800-USC-CARE and ask for information about the Kidney Transplant Program.
Children’s Organ Transplant Association http://www.cota.org/