Category Archives: Who are We

Comments Off on Philippe Juvin

Being a close family member to a person that has been affected by NS I would like to introduce myself to you.

I strongly believe that we can share a lot of datas and make huge steps forward. With two sides working

together, patients needs and comprehensive scientific background helped me lot when being the Vice President of

Association of Primitive or Idiopathic Nephrotic Syndrome Patients in France.

I want to bring this now to help NephcEurope.Philippe

Currently, working as an independent consultant ba...

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Comments Off on Kaloyan Petrov

My name is , born 1980. I am from Bulgaria, a small, beautiful country in South-Eastern Europe.

I became aware of the decease as Michael, one of my sons, Kalo big 2

has been Nephrotic Syndrome diagnosed in the autumn of 2014.

Since then, my family is going through difficult times, but we are not losing

hope that our little kid will be the winner in this hard battle.

Besides taking care of my children, I work as a compliance professional in

a bank and fill up my spare time by doing jogging, watching footb...

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Comments Off on Marieke van Meel

I am a mother of 3 children of respectively 15, 11 and 9 years old.

mariekeMy eldest, my son Niels, is suffering from a rare disease called Nephrotic Syndrome, which he got at the age of 2. He has a frequent relapsing complicated form of Nephrotic Syndrome. I have studied HND Economics & Linguistics. At this moment, I work as International Coordinator Registries for Organtransplantation at Eurotransplant in Leiden, the Netherlands...

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Comments Off on Helder Leong

HelderMy story began almost exactly 31 years ago when I was first diagnosed with Nephrotic Syndrome (MCD). My parents, concerned about the situation and the lack of information took me to the USA. Little information was added to my condition. So it was an unfair battle almost between me and my family against this disease at that time, because there was not enough information that exists nowadays.
During nearly 20 years I have taken very high doses of cortisone...

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Comments Off on Anders Nielsen


My name is Anders Nielsen.
I am 32 years old,live in Copenhagen in Denmark. I have always been very active with sport, and socially.
In 2008 I was diagnosed with FSGS, which is a auto-immune disease in which the immune system destroys the kidneys. I have been in a lot of different treatments. Nothing worked!
I have bad hearing which came in December 2007 and there are 2 documented patients with my diagnose who has bad hearing in the whole world. I am one of them.
In February 2008 I showed a ...

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Comments Off on Bart Hoogervorst

Hello everybody,

barthoogervorst[1]My name is Bart Hoogervorst and I am 25 years old. I have nephrotic syndrome (FSGS). I have this rare disease, since I was 2. That’s now 24 years (I’ am almost 26). I have had several recidivisms, the last one was in october 2008.
When I was 16, I had my last biopsy, before that I had MC. Because of the biopsy they found out that it was FSGS.

I have medicines to stay stable. I have cyclosporine and I also have an ACE inhibitor. The cyclosporine I have had for 13 years now.

I’ am...

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Comments Off on Wendy Cook

Hello, my name is Wendy Cook. I am a mother of two children amongst which is David who is suffering from NS.

WendyCookFamily[1]I am a trustee and chair of the ‘Nephrotic Syndrome Trust’ (Nest) based in the United Kingdom ( Nest was launched in 2005, the charity aims to:

  • Raise awareness of Nephrotic Syndrome
  • Offer a website resource, and support to sufferers and their families who are affected by Nephrotic Syndrome
  • Raise money to fund pioneering research.

I am also involved in a new global ini...

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