About Asociatia Nas Rosu – Piros Orr Egyesület
Since the beginning of our journey, many people have asked us, about the origin of our association’s name, Piros Orr (Red Nose). Some may associate it with the international organization Red Noses International, but we can assure everybody, that our story is entirely different. When the idea of founding an association dedicated to our son Marci emerged, we started thinking about a suitable name for this organisation. Our sun, Marci, spends a lot of time lying face down on his matress and consistently rubs his little nose against the sheet, resulting in it almost always being red. Hence in 2020, the Piros Orr Association was born. The aim of the association is to create an organised framework in order to help families who are raising their children with multiple disabilities, to address issues affecting children with severe disabilities (severe intellectual and physical disabilities, global developmental disability) and rare genetic diseases associated with epilepsy (SLC1A2, encephalopathy, etc.) and to improve their quality of life. We organize camps, events, and various therapy sessions in collaboration with therapists, educators, and physiotherapists aiming to improve the children’s quality of life. Furthermore, we aim to keep severely handicapped children with rare genetic diseases and their families within a community and to ensure their educational and social development.