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