The first Joy “Campaign of RADOIR” with the slogan “Rare but not Alone!” held on 10th Dec, 2018 with the presence of some Comedians, storytellers, children’s favorite show men and clowns.
Dr. Hamidreza Edraki, the Managing Director of RADOIR, noted that these kind of events are essential for improving the rare families’ social engagement and motivation.
“Rare but not Alone” means that rare patients are not looking for attention and mercy, Rare Diseases Foundation of Iran is always by their side.
Rare artists had sent their paintings to the ECO Cultural Institution secretariat in Tehran to evaluate their abilities besides other young story tellers.
Dr. Seyed Ali Javad Mousavi, the Social Deputy of Iran University of Medical Sciences, and Dr. Mohamad Hadi Ayazi, the Social Deputy Minister of Health attended the event as well.
To be mentioned the first “Joy Campaign” was held coincidently with the 3rd int’l festival of message of Peace Young Storytellers at ECO conference venue.
In addition to the preparing joy and happy programs for the children and their families, their artworks like painting, storytelling, nursery rhymes, music, etc were exhibited as well.
The rare patients attending the conference were affected by Rat syndrome, Ichthyosis, Mucopolysaccaridosis, Neurofibromatosis, Epidermolysis Bullosa, Phenylketonuria, short stature, Dystrophy, Myasthenia Graves.
Their families expressed their satisfaction and considered the festival as a consolation to face with the families like themselves.