Nephrotic syndrome type 1

Healthcare/Doctors

How do I find a center of excellence in nephrotic syndrome type I?

One of the best ways to find a treatment center such as a metabolic clinic or a physician with experience in treating nephrotic syndrome type I is to contact a support group. In the United States, there is NephCure Kidney International. In the United Kingdom, there is the Nephrotic Syndrome Trust or NeST. There are also many organizations that deal with all types of kidney disorders including the National Kidney Foundation and the American Association of Kidney Patients in the United States and the Kidney Foundation of Canada or Kidney Care UK.

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What specialist doctors should I see if I have nephrotic syndrome type I?

What specialist doctors should I see if I have nephrotic syndrome type I?

Rare diseases like nephrotic syndrome type I can benefit from a multidisciplinary approach. This approach involves healthcare professionals with specialized skills and expertise. They work together to make treatment recommendations and to provide quality care of individuals and families. Depending upon the specific symptoms in an individual multidisciplinary team may require a pediatric metabolic disease specialist; a kidney disease specialist (nephrologist) who can assess and treat symptoms affecting the kidney; a heart specialist (cardiologist) who can assess and treat symptoms affecting the heart; a blood disease specialist (hematologist) who can assess and treat symptoms affecting the blood; a transplant surgeon who can perform a kidney transplant; and a genetic counselor who can help people understand the disease and the implications for the person and other family members.

Talk to your doctor about the best specialists in your area to follow an individual with nephrotic syndrome type I.

References
  • Kishnani PS, Austin SL. Every Player Counts: The Team Approach to Rare Diseases. MedScape website. http://www.medscape.com/viewarticle/821125_3

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