Partner organisations

Patient organizations for NBIA are being founded in more and more countries. Here we provide an overview of all the organizations that we are aware of worldwide.

NBIA Alliance Partner

The following organizations are members of Hoffnungsbaum NBIA Alliancein 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 have specialized in one form of NBIA.

INADcure Foundation

USA, founded: 2017

Leena Panwala

Kans voor PKAN Kinderen

Netherlands, founded: 2017

PKAN families

Organizations for related diseases

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

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