The citizens’ association LIFE WITH CHALLENGES from Bitola in cooperation with Macedonian Post promoted a post-stamp titled Children with Rare Diseases on 4th October at MASA.
Loran Kufalo is the author of the post stamp with nominal value of 48 denars, which has been published in print of 6000 copies.
Statement by Vesna Aleksovska, President of the Association:
To live with a rare disease means to live with a friend, not with a foe. Simply we get to know the rare disease and learn how to live best with it. We face many challenges, starting with the diagnosis, then the search for information, medicines, health and social services. The reality is that it is necessary for all the institutions to work together with the associations in order to have advancement. Together we are stronger and we can do more. When we have help we can work and have families, we can lead a normal life as everybody else who does not face a rare disease. We deserve to be part of the society and make our contribution.
The post-stamp is the first in the world dedicated to rare diseases and we are proud that our member Gordana Loleska, employed at Macedonian Post, has initiated this process and Macedonian Post has realized it as such. With this initiative we want to raise the public awareness about rare diseases and the challenges that families face.
Statemen, Iva Petrevska, patient with rare disease Epidermolisis Bulosa
I wish that they invented a therapy for all rare diseases, for some there is, for others there isn’t. For me there isn’t, but I can live without therapy. I’ve got my mum and dad who are always here with me. A big thank you to Macedonian Post who have thought of us, the children with rare diseases.
Statement, General Manager of Macedonian Post Office, Fadis Rexhepi:
All the institutions in Macedonia, all the greater companies should make everything possible to improve the life of families facing a rare disease. We should help raising the awareness for these diseases in Macedonia. This post stamp dedicated to the Children with Rare Diseases is but a small gesture that we could offer, let’s hope that we’ll be able to do much more.
