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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.

 

Achievements

  • 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

 

Members

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