We lit the Dancing House blue, hoping for a cure for little Oliver and the other “angel children”, on 15th February
Dancing house blue. It shone in honor of all the “angelic families” who face a difficult fate every day. On 15th February, we celebrated International Angelman Syndrome Day. More than 100 patients live with this rare genetic disease among us in the Czech Republic.
The initiators of the event are the parents of little Oliver and the founders of a non-profit organization Association of Gene Therapy. And with one goal – to support research into this rare disease.
“With this initiative, we would like to point out the important activities that are taking place in the field of rare diseases. Above all, the research that we initiated more than two years ago “, explains the co-founder of the Association Lenka Matějková.
“The aim of the research is to study selected genes and biological processes that are involved in the development of Angelman’s syndrome. Understanding them can be important in finding a cure for genetic defects”, says Radislav Sedlacek, CCP director.
“We are proud to be able to join this international initiative and thus include the Czech Republic in the list of countries where the issue of rare diseases is paid attention to,” adds Radoslav Hajgajda, the association’s founder.