Get Involved


We have fantastic volonteers that help us grow:

Bart from the Netherlands, adult patient with NS, secretary
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
Gertrude from Belgium, organising bi-national family event, fundraising and secretary
Ans, grandmother of a child with NS, fundraising & PR for the province of  Limburg, The Netherlands
Steef from the Netherlands
Inge from the Netherlands, mother of a child with NS, organising bi-national family event, fundraising

Our international colleagues we also want to mention here:
Wendy from United Kingdom, mother of a child with NS, Secretary and International Policies, chair of NEST
Gertrude and team, building NephcEurope Belgium
Johanna & Henning, mother and son, building Nephie e.V. in Germany
Andy and his volunteers, building ASNIT in Italy
Delphine and volunteers building AMSN in France
Alphonso and team building AESNI in Spain


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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