Get Involved


We have fantastic volonteers that help us grow:

Bart from the Netherlands, adult patient with NS, member of the Board
Heddy from the Netherlands, father of a child with NS, website committee
Jeroen from the Netherlands, website support
Merel from the Netherlands, adult patient, NS news
Marieke from the Netherlands, mother of a child with NS, chair,  fundraising, external contacts and international Policies and Developments.
Philippe from France, support on medication questions
Kaloian from Bulgaria, father of a child with an NS
Ils from Belgium, mother of child with an NS
Siobhan from Ireland, mother of a child with NS
Wendy from the UK, mother of child with an NS


Our international colleagues that manage a National Patient Organization with their team, we also want to mention here:

Wendy from United Kingdom, mother of a child with NS, Secretary and International Policies, chair of NEST
Tom and team, building NephcEurope Belgium
Johanna & Henning, mother and son, building Nephie e.V. in Germany
Andy and his volunteers, building ASNIT in Italy
Vincent and volunteers building AMSN in France
Alphonso and Chantal and team building AESNI in Spain
Madhav who is working with me to further the care for Nepalese patients


BUT….we need more people on board especially people:

  • with international legal knowledge
  • an accountancy advisor
  • people that would like to organise a fundraiser for our foundation
  • sponsors
  • with marketing skills

Please join us!

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