The NephCure Foundation is the One Stop Shop for Information and Resources on Nephrotic Syndrome and FSGS.
- NephCure’s Online Chat Group- NephSpace – http://www.nephcure.org/nephspace
- Nephkids – http://cybernephrology.ualberta.ca/nephkids/
- Kidcomm – http://www.kidcomm.org/
- 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 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/
- 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: http://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/
- The National Kidney Disease Education Program (NKDEP): Has a lot of information that is informative for patients.
- Glomerular Filtration Rate: 60 or higher is in the normal range. Find out what this number means to you.
- NKDEP provides a calculator for professionals to use. Share it with your doctor and/or nephrologist if they don’t know about it already.
- Kidney transplant:
1-800-USC-CARE and ask for information about the Kidney Transplant Program.
Children’s Organ Transplant Association http://www.cota.org/