THE INTERNATIONAL DAY OF ANGELMAN SYNDROME

THE INTERNATIONAL DAY OF ANGELMAN SYNDROME
17. 2. 2021 | Category: Nezařazené Oliver's Story Research

PRAGUE (FEBRUARY 16, 2021) – The Dancing House was lit up in blue on Monday, February 15. Under the auspices of Mayor Jana Černochová and Deputy Mayor Alexandra Udženii of the Prague 2 Municipal District on the occasion of the International Angelman Syndrome Day. The sole aim was to support the unique research that gives this disease a great chance of a cure.

Experts believe that a cure is beyond reach, which is why many important activities have been taking place in recent months in the field of rare diseases and innovative forms of treatment. One of them is basic research, which was initiated more than two years ago by the parents of little Oliver and the founders of the Association of Gene Therapy, z. s., the first in the Czech Republic.

 

“Oliver is an amazing child, his immediate laughter will completely disarm you. When his parents, the founders of the research, approached me to become a patron of the project, I didn’t hesitate. It is extremely important to support something so special and with such huge potential. But most of all, it’s a chance for a better life for all these children.” Alexandra Udženija, Deputy Mayor of Prague 2 for Social Affairs.

 

Prague 2 is proud to join this international initiative, where important buildings such as the Burj Khalifa, the Cleveland Tower, the Mercedes-Benz Superdome or Niagara Falls are lit up around the world, and to add the Czech Republic to the list of countries where more and more attention is being paid to rare diseases.

 

Anna Arellanesová, chairwoman of the Czech Association for Rare Diseases (CAVO), adds: “We want to ensure that none of the rare patients are left behind. There are around half a million of these people in the Czech Republic and not everyone is lucky enough to discover their correct diagnosis in time and receive the right care and, when available, treatment. To ensure that these people are not left behind, we are seeking a systemic approach in the form of a legislatively established national network of highly specialised centres at teaching hospitals, which are linked to the European Reference Networks for Rare Diseases, an infrastructure managed by the European Commission that has been in place for several years.”

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