Partner organisations

In more and more countries, patient organizations are being set up for NBIA. Here we give an overview of all the organizations that we know about worldwide.

NBIA Alliance Partners

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

Aisnaf

Italy, founded: 2006

Natale & Fabrizia Scalise

info@aisnaf.org

www.aisnaf.org

AIDNAI

France, founded: 2011/12

Jean-Loup Vasseur

jeanloup.vasseur@free.fr

ENACH Asociación

Spain, founded: 2013

Antonio López

info@enach.org

www.enach.org

Stichting IJzersterk

Netherlands, founded: 2014

Angelique Roodenburg

info@stichtingijzersterk.nl

www.stichtingijzersterk.nl

NBIA Canada

Canada, founded: 2014

Michelle Sheppard-Whalen

nbiacanada@gmail.com

www.nbiacanada.com

NBIA Suisse

Switzerland, founded: 2015

Fatemeh Mollet

nbiasuisse@gmail.com

www.nbiasuisse.org

 

NBIA Iran

Iran, initiated in 2014, officially approved in 2019

Fatemeh Mollet

nbiasuisse@gmail.com, nbiairan@gmail.com

www.nbiairan.org

NBIA Hungary

Hungary, founded: 2017

Ovidiu Botezán

ovidiubotezan@gmail.com

www.nbia.hu

NBIA Polska

Poland, founded: 2018

Maciej Cwyl

nbia.polska@wp.pl

www.nbia-polska.pl

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

info@INADcure.org

www.INADcure.org

Kans voor PKAN Kinderen

Netherlands, founded: 2017

PKAN Families

info@maakjesterk.nu

www.maakjesterk.nu

Related Disease Organizations

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

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