Zebrakinder: Innsbruck starts the visibility run for Ella!

Zebrakinder: Innsbruck starts the visibility run for Ella!

Baggersee, Innsbruck, Österreich - On July 2, 2025, the Visibility Run takes place in Innsbruck, an event that aims to draw attention to the rare genetic disease of the so -called “zebrakinder”. Ella, a five -year -old girl from Austria, suffers from Kat6a, a gene mutation that brings motor, cognitive and linguistic restrictions. In Austria there are currently only six confirmed cases of this disease, while only around 600 children are affected worldwide. This rare illness presents affected families with enormous challenges and requires more visibility and support. The event at the Baggersee in Innsbruck, which takes place from 8:30 a.m. to 10:30 a.m., is organized to educate the public about the needs of these children and their families.

The human geneticist stallion slogger emphasizes that every person is unique and emphasizes how important time and visibility are for affected families. Monika Rammal from Zebrakind Fondation points out that support for affected families is urgently needed. The organization, which was founded specifically to support children with the Kat6a/B gen mutation, promotes the exchange among families and offers professionally sound information, legal and therapeutic help as well as public relations. Under the motto "Zebrakinder", a platform is created that bundles the community, information exchange and commitment. The aim is to make the disease better known and to improve the life realities of the affected children.

The challenges of the gene mutation

The Kat6a and Kat6B genes have little research, which is why the medical care and development of children require special attention. Organs usually grow in healthy children, while this process is often disturbed with Kat6a/B. Many affected people suffer from severe organ screeches, which can have fatal consequences. Doctors and therapists are essentially involved in the development of the children in order to support them in the best possible way and respond to the various challenges of the disease.

The Kat6a Foundation Austria plays a central role in the support of affected families. It was founded out of the need to create a network that offers practical help and emotional strength. The organization is also committed to strengthening the research landscape in Austria and beyond, in the hope that more will be found out about these genetic diseases. Scientific initiatives, such as promoted by the Federal Ministry of Education and Research, aim to promote research of rare diseases and to improve the quality of life of those affected. According to a definition of the EU, every fourth known disease is considered rare, although many show symptoms in childhood and can significantly restrict the lifespan of those affected.

The Visibility Run is part of a greater movement that supports the global day of rare diseases and gives people with rare diseases a voice. Such events are crucial in order to raise more awareness of the challenges of those affected and to maintain support and understanding from society. Families who are confronted with such diseases hope that the public will find out and support and support the public through events such as Visibility Run about reality and everyday life of zebra children. In summary, it can be said that the collaboration of self -help organizations, families and medicine plays a fundamental role in dealing with rare diseases. The initiatives that are launched must continue to be strengthened in order to meet the needs of those affected and their relatives.

For more information about the topic of the zebra children and the upcoming events, please visit the pages of 5min , Schongenial and bmbf .