Partner organisations

Patient organizations for NBIA are being established in more and more countries. Here we give an overview of all the organizations that we know of worldwide.

NBIA Alliance Partner

Hoffnungsbaum The following organizations are members of the NBIA Alliance, in which close cooperation takes place.


Italy, founded: 2006

Natale & Fabrizia Scalise


France, founded: 2011/12

Jean-Loup Vasseur

ENACH Asociación

Spain, founded: 2013

Antonio López

Stichting IJzersterk

Netherlands, founded: 2014

Angelique Roodenburg

NBIA Canada

Canada, founded: 2014

Michelle Sheppard-Whalen

NBIA Suisse

Switzerland, founded: 2015

Fatemeh Mollet



Iran, initiated in 2014, officially approved in 2019

Fatemeh Mollet,

NBIA Hungary

Hungary, founded: 2017

Ovidiu Botezán

NBIA Polska

Poland, founded: 2018

Maciej Cwyl

Other NBIA organizations

These organizations are not part of the NBIA Alliance and specialize in one form of NBIA.

INADcure Foundation

USA, founded: 2017

Leena Panwala

Kans voor PKAN Kinderen

Netherlands, founded: 2017

PKAN families

Related diseases organizations

These organizations represent disorders that are not NBIA disorders but are "related" to NBIA because of similar symptoms or similar research approaches.

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