Although it may be out of reach today, a cure for each of the NBIA disorders is in our sights. We care deeply about improving the lives of children and adults with NBIA. Our team at NBIAcure will provide support and information to patients, families, clinicians and researchers, initiate new research studies to lay the foundation for clinical trials, and collaborate with academic and industry partners to develop new treatments.


NBIA Alliance

The Alliance is an international umbrella organization for NBIA lay advocacy groups. It started in January, 2012, in conjunction with the kick-off meeting of the European Union funded project TIRCON (Treat Iron-Related Childhood-Onset Neurodegeneration).

As of January, 2017, we are 8 members strong from member organizations in Canada, France, Germany, Italy, Netherlands, Spain, Switzerland and the United States.


TIRCON (“Treat Iron-Related Childhood-Onset Neurodegeneration”)

TIRCON (“Treat Iron-Related Childhood-Onset Neurodegeneration”) has been a research consortium comprising 13 partners from 8 countries and funded by the EU under FP7. The project lasted from November 2011 until October 2015. TIRCON brought together the existing outstanding, but scattered expertise in NBIA research and care throughout Europe and on the international level. The project set-up a structured network to improve diagnosis and treatment of NBIA which persists beyond the project end.


NBIA Disorders Association (USA)

Patricia Wood

E-mail: pwood@NBIAdisorders.org

Website: NBIAdisorders.org

NBIA Suisse (Switzerland)

Fatemeh Mollet 

E-mail: nbiasuisse@gmail.com

ENACH Asociación (Spain)

Antonio López 

E-mail: info@enach.org

Website: enach.org

Stichting Ijzersterk (Netherlands)

Maayke Arends & Alie Nagel

E-mail: info@stichtingijzersterk.nl

Website: stichtingijzersterk.nl

Associazione Italiana Sindromi Neurodegenerative Da Accumulo Di Ferro (Italy)

Natale & Fabrizia Scalise 

E-mail: info@aisnaf.org

Website: aisnaf.org

NBIA Canada

Michelle Sheppard-Whalen

E-mail: nbiacanada@gmail.com

Website: NBIAcanada.com

Association International DNAI (France)

Jean-Loup Vasseur

E-mail: jeanloup.vasseur@free.fr

Website: aidnai.org

Hoffnungsbaum e.V. (Germany)

Angelika Klucken

E-mail: Hoffnungsbaum@aol.com

Website: hoffnungsbaum.de

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