Mayor José Luis Sanz announces the 1st Race for Rare Diseases, dedicated to Butterfly Skin, which will take place on Sunday, October 4, as part of the 5K Nervión-San Pablo.
The first edition of the Race for Rare Diseases now has a date: Sunday, October 4. The event is part of the 5K Popular Race Nervión-San Pablo, organised by the City Council of Seville through the Municipal Sports Institute (IMD), and will be dedicated to Butterfly Skin (epidermolysis bullosa).
The announcement was made this Friday at the City Hall during the mayor's reception of young Sevillian Leo García, aged 12 and a resident of the Cerro-Amate district, who has become one of the main advocates for this rare disease in Spain. The meeting also included professionals from the DEBRA-Butterfly Skin Association and physiotherapist Antonio Pérez ‘Toni’, a health communicator on social media.
The event, according to the City Council, aims to use sport as a platform to raise awareness about rare diseases. Butterfly Skin is a genetic condition that causes extreme fragility of the skin and requires continuous and specialised care.
Registrations will open on September 22 on the IMD website. The race will take place along the route of the 5K Nervión-San Pablo, an urban circuit that runs through the Nervión-San Pablo axis.
“Seville wants to stand by Leo, his family, and all the people who fight against a rare disease every day. Leo, at just 12 years old, is showing that the ability to raise awareness, mobilise, and help others knows no age. His commitment to Butterfly Skin is an example for all of us,” said the mayor.
Sanz emphasised that the race aims to be repeated in future years and encouraged clubs, families, and runners to join in. “We want this first race to be the beginning of a tradition in Seville. Sport has an enormous capacity to unite people and turn solidarity into action. That’s why I encourage all Sevillians to participate on October 4, to run, to accompany, and, above all, to show that Seville stands with those who need it most,” he added.
Leo's presence at the City Hall served to put a face to a reality that affects many families and to call for more research, specialised attention, and support for those affected. The DEBRA-Butterfly Skin Association is the national entity that supports patients and families in Spain.
The mayor concluded his speech with a direct appeal for participation: “I invite all Sevillians, families, sports clubs, and anyone who wants to contribute to take part in this race. Every step counts, and each participant will help make rare diseases more known and ensure that those living with them feel more supported. On October 4, we have an appointment with solidarity.”
Those interested in running can formalise their registration starting September 22 on the IMD website. The race will take place on Sunday, October 4.
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