Useful links

Recommended resources for patients, families, physicians and researchers.

International organisations

NBIA Alliance

International umbrella organisation – "Worldwide Partners for a Cure".

NBIA Disorders Association

Comprehensive information on all NBIA subtypes (USA).

NBIAcure.org

Detailed medical information and ongoing studies.

Hoffnungsbaum e.V.

German NBIA patient organisation.

Research & Registries

TIRCON Patient Registry

International NBIA patient registry and biobank.

NORD – Rare Diseases

National Organization for Rare Disorders.

NBIA Scientific Meetings

Overview of past and upcoming NBIA symposia.

Missing a link? Let us know via the contact form.