Personal advice

We are happy to help you – do not hesitate to get in touch with us!

You can use our Contact form to join us in write a direct e-mail or call us on +49 (0)2405 69 99 781. If you have specific questions, we will be happy to put you in touch with relatives or parents of those affected who are extremely familiar with the individual forms of NBIA because they have been dealing with them for years.
We also have members who specialize in crisis management professionally. Your contact persons are:

Noah Rusch

2. Chairman, first point of contact
Father of a son with BPAN

Areas of expertise:
BPAN, swallowing disorders

Angelika Klucken

Former Chairperson,
Mother of a son with PKAN

Areas of expertise:


Beate Sonnenschein


Areas of expertise:
Family network, information material, report and counselling folders

Ufuk Calisici

Member of the Board of Directors,
Friend of an affected family

Areas of expertise:
Crisis management, mental support

Markus Nielbock

1. Chairman,
Father of a daughter with BPAN

Areas of expertise:
NBIA Research, BPAN

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