NephCure Kidney International ®

Saving Kidneys, Saving Lives

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The NephCure Foundation is the One Stop Shop for Information and Resources on Nephrotic Syndrome and FSGS. 

Support Groups:

  • NephCure’s Online Chat Group- NephSpace – http://www.nephcure.org/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/ 

 

Living with Kidney Disease

  • Just for Kids!
  • Understanding Kidney Disease
  • Resources A-Z
  • Understanding Nephrotic Syndrome and Glomerular Disease
  • Treatment Options
  • Diet and Nutrition
  • Managing Your Care
  • Educational Programs
  • End Stage Renal Disease
  • Proteinuria Resource Center
  • Raising a Child with Nephrotic Syndrome
  • Raising a Child with Nephrotic Syndrome
  • Support Resources
  • FAQs

Our Mission

NephCure Kidney International’s ® mission is to accelerate research for effective treatments for rare forms of Nephrotic Syndrome, and to provide education and support that will improve the lives of those affected by these protein-spilling kidney diseases.

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150 S. Warner Road
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King of Prussia, PA 19406
1.866 NephCure (637-4287)
info@nephcure.org
EIN: 38-3569922

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