Specific Support Resources

The NephCure Foundation is the one stop shop for information and resources on Nephrotic Syndrome and FSGS. 

Treatment Information - find answers to frequently asked questions about the following

• Acthar
  
• Prednisone
• Rituximab(rituxan)
• Cyclophosphamide (Cytoxan)
• Mycophenalate Mofetil (CellCept, Myfortic)
• ACE Inhibitors
• Angiotensin II Receptor Blockers (ARBs)
• Cyclosporine
• Tacrolimus (Prograf)
• Sirolimus (Rapamune)
  

 Support Groups:

• NephCure’s NephSpace – http://www.nephcure.org/nephspace
• Nephkids - http://cybernephrology.ualberta.ca/nephkids/
• Kidcomm - http://www.kidcomm.org/
• Email - kidneykidneydisease@yahoogroups.com
• Google Group on Kidney Disease - http://groups.google.com/group/alt.support.kidney-disease?hl=en

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

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
• 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:

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

 Find resources in the state you live in... click here