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Diari Valencià

L'Alcúdia de Crespins Hosts II Solidarity March for Rare Diseases

The event aims to consolidate a research project for a gene therapy for Kars1 syndrome, an ultra-rare disease.

Generic image of a solidarity march for rare disease research in a Mediterranean town.
IA

Generic image of a solidarity march for rare disease research in a Mediterranean town.

The town of L'Alcúdia de Crespins is organizing the second edition of its Solidarity March on May 3rd to raise funds for research into rare diseases, specifically Kars1 syndrome.

This event, inspired by the memory of a child who suffered from Kars syndrome, seeks to raise awareness and secure financial support for a crucial research project. The initiative is vital, as there are currently just over 50 cases of this ultra-rare disease worldwide, and there is no known cure.
The Cure Kars-Laia Foundation, together with the L'Alcúdia de Crespins City Council, are the organizers of this event. Thanks to the first edition of the march, over 16,500 euros were raised, which allowed the launch of the first research project for the development of a gene replacement therapy for KARS1, in collaboration with the Carlos III Health Institute (ISCIII).
The objective of this second march is to consolidate this research project, which has an estimated cost of 250,000 euros over four years. The organization has opened a period for receiving donations from companies and residents, encouraging citizen participation to promote scientific research in this field.
Race bibs for the march are now available for purchase at various points in the town, including the L'Alcúdia de Crespins City Council, Baldufa, Forn Ribelles, Sara, Vinarium, and Forn i Que Bo!!!. Zero bibs are also available for those who wish to contribute without participating in the march.

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