The story of Gordana
Last year a member of the rare disease association ‘Life with challenges’, a mother of a child with Alport syndrome, Gordana Loleska, employed at the post office in Ohrid, began an initiative for creating a postal stamp with the Rare Disease Day logo to help in raising awareness for rare diseases in Macedonia. This initiative was supported by many medical professionals in Macedonia who sent letters of support to the Director Mr. Elez Elezi.
We did an internet search and we realized that this kind of stamp will be the first of its kind – dedicated to Rare Disease Day and all the children with rare diseases – it is also a great achievement for the Macedonian post office, an accomplishment on a global scale.
This year the Post Office accepted the initiative and we hope that the stamp will be ready for distribution for Rare Disease Day 2017. The name of the stamp will be ‘Children with Rare Disease’.
The stamp will be promoted by the National Alliance for Rare Diseases in Macedonia and also by the Post Office.
It is a great idea that came true… a great way to promote awareness… and we hope that other countries will follow.
We are very proud of Gordana Loleska who enthusiastically took this idea forward. We also want to say thank you to the general director of the Post Office Mr. Fadis Redzepi, to the director Mr. Elez Elezi, to the director of the Post Office in Ohrid Mr. Sejfula Hani and to the Council at the Post Office of R. Macedonia, with its President Ms. Vasilevska Sonja.