AISNAF ETS
AISNAF is the Italian Patient Association representing about 40 children affected by one of the Neurodegeneration with Brain Iron Accumulation (NBIA)disorsers. NBIA are ultra-rare, genetic and devastating diseases and, at present, there is no cure for any NBIA disorder.
The funds raised through participation in the 2025 Milan Relay Marathon contributed to the improvement and management of the Tircon patient registry, the European database collecting data on patients affected by NBIA disorders, making it available to researchers around the world.
This year you can support with us two new leading research projects. The Committee of International Experts, set up by AISNAF and other European and US NBIA Patient Associations with which AISNAF actively collaborates, is currently evaluating proposals received from internationally renowned researchers and clinicians, and will support AISNAF in identifying those projects that are most likely to advance scientific research on our syndromes.
Every euro raised will bring us closer to a cure, and AISNAF is keen to be in the front line in promoting this success, as it has always been since its establishment 19 years ago, with over €400,000 in research funding.
