Personal advice

We are here for you - do not hesitate to contact us!

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

Noah Rusch

2. chairman, first contact person
Father of a son with BPAN

Consulting focus:
BPAN, dysphagia

Angelika Klucken

former chairwoman,
Mother of son with PKAN

Consulting focus:


Beate Sonnenschein


Consulting focus:
Family network, information material, findings and counseling folder

Ufuk Calisici

Board Member,
Friend of a concerned family

Consulting focus:
Crisis management, mental support

Markus Nielbock

1st Chairman,
Father of a daughter with BPAN

Consulting focus:
NBIA Research, BPAN

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