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NBIA Alliance

The NBIA Alliance is the first informal international umbrella organization for NBIA lay advocacies, currently comprising 8 associations. Fostered by TIRCON, the NBIA Alliance was initiated on the occasion of the TIRCON kick-off meeting in January 2012.

Its main objectives are to increase awareness of NBIA in the health care community and the public, and to support cooperative research into NBIA Disorders.



  • Representing all NBIA diseases as an internationally united group with one voice, sharing a common vision and approach
  • Encouraging families in other countries to start non-profits in their country and providing advice and experience during this process
  • International visibility and online accessibility in 5 languages by an NBIA Alliance site and forum on the EURORDIS platform RareConnect and on www.NBIAalliance.org
  • Participating in stakeholder events with talks, poster presentations and information booths
  • Awarding NBIA Alliance Travel Grants for postdoctoral fellows and early career clinical doctors to attend the NA & NBIA Symposium 2014
  • Awarding NBIA Alliance funding for the international NBIA patient registry and biobank for maintenance and enhancement beyond TIRCON



Canada: NBIA Canada
France: AIDNAI-Association International DNAI
Germany: Hoffnungsbaum e.V.
Italy: AISNAF-Associazione Italiana Sindromi Neurodegenerative Da Accumulo Di Ferro
Netherlands: Stichting Ijzersterk
Spain: ENACH Asociación
Email: info@enach.org 
Website: www.enach.org
Switzerland: NBIA Suisse
USA: NBIA Disorders Association