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Retrophin logo

Date: August, 2017

The NBIA Alliance, an umbrella organization for NBIA patient advocacy groups around the world, has received a $122,000 donation to sustain a critical research tool: the International NBIA Patient Registry and Biobank from July 2017 to December 2018.

The gift is from Retrophin Inc., a San Diego-based company that has begun testing a drug for PKAN patients. The registry and biobank will be used to advance NBIA research, enable faster access to worldwide clinical trials and draw greater interest from potential funding sources to bring a drug to trial.  It will assist researchers working on these diseases with the natural history studies data, which give insights into the course of a disease.

TIRCON meeting in Munich, Germany in 2015

Date: November, 2015

Over 65 researchers, clinicians, NBIA family members and representatives of patient organizations were on hand for the final TIRCON meeting Oct. 15 and 16 in Munich, Germany, to take stock of all that has been accomplished over the past four years.

Treat Iron-Related Childhood-Onset Neurodegeneration, or TIRCON, was a European Union- funded research project for 5.2 million euros, or approximately $7 million. The grant started on Nov. 1, 2011, and ended Oct. 31, 2015 with a focus of advancing research into Neurodegeneration with Brain Iron Accumulation (NBIA) disorders.

NBIA Alliance Travel Grant Awards


Date: November, 4th 2014


The international NBIA umbrella patient organization NBIA Alliance announces the award recipients of the travel grants to participate in the 3rd Joint Symposium on Neuroacanthocytosis (NA) and Neurodegeneration with Brain Iron Accumulation (NBIA), held in Stresa, Italy, from October 30th to November 1st, 2014.