The 12th Seiser Alm Half Marathon 2025 will once again be a
charity run for a good cause.
This time, we are supporting the voluntary organization
DEBRA Family, which assists people affected by the
rare skin disease Epidermolysis bullosa (EB).
Those affected by EB are often called
“butterfly children” because their skin is as fragile as a butterfly’s wings – even the slightest touch can cause painful wounds. Around 500,000 people worldwide are affected, including families here in Südtirol.
DEBRA Family was founded by patients and their families and is deeply committed to making the everyday lives of butterfly children easier. The association provides concrete support and advice, helps connect affected families with medical specialists, and ensures access to specialized therapies. A particular focus is also placed on promoting medical research, for example at the EB House in Salzburg or the EB Center in Modena, with the goal of improving quality of life and, in the long term, finding a cure.
With our Charity Run, we support this important mission. Every donation helps to ease suffering and bring hope.