News & Blog

Awareness campaign for Hunter syndrome affects real change in Serbia

Awareness campaign for Hunter syndrome affects real change in Serbia

By Amanda Chick One of the great aspects of being a PR professional is that we are exposed to a wide range of industries, sectors and subjects during the course of our work. Occasionally we also have the great honour of helping to support worthy causes, which was the case recently when Action Global Communications was invited to organise and promote a unique travelling photography exhibit project in Czech Republic, Hungary, Romania and Serbia, designed to increase the recognition of Hunter syndrome, a rare genetic disease. The photography exhibit, called “Hunter in Focus”, is a project led by former fashion photographer Rick Guidotti, who travelled around the world photographing people with Hunter syndrome, and Shire Global, a pharmaceutical and healthcare company. Seen almost exclusively in boys, Hunter syndrome is a progressive, debilitating, multi-systemic disorder that becomes evident in early childhood and limits the lives of those people who are affected by it. Diagnosing Hunter Syndrome can be quite difficult as many of the early signs and symptoms are common in children, such as recurrent ear infections, runny nose, and gastrointestinal issues. The physical symptoms associated with Hunter syndrome manifest themselves in such a way that many patients have a similar look, regardless of age or race.  The exhibition aimed to raise awareness about the lives of patients with the disease, and the problems they and their families confront on a daily basis. This particular project had something special about it from the start, but the project developed a unique poignancy in Serbia, where there was no funding for children affected by the disease. As a result of growing public awareness of the disease in Serbia, no doubt supported by Action’s public promotion of the “Hunter in Focus” photography exhibit, and in synergy with intense advocating by patient and health groups, those children diagnosed with Hunter Syndrome in Serbia have recently been awarded government funding for their treatment. Srba Jovanović, Country Manager for Serbia said, “On Friday 15 August 2014 it was announced that children in Serbia affected by Hunter syndrome will now receive therapy funded by the Government. While therapy for sufferers of Hunter syndrome has been available internationally since 2007, the future for both the affected children and their families in Serbia was uncertain until now. “The Minister of Health has stated that the funds for the treatment are secured for the next seven months, and that the State will continue to care about the needs of these patients thereafter. This is a breakthrough for all Hunter Syndrome patients and testament to the efforts of everyone involved in growing awareness of the funding issue in Serbia.”      

Read More

Our really experienced Georgia team has been awarded the EU4Georgia III contract – a project..

Read More

Wishing you and your loved ones a blessed Eid! https://youtu.be/cdjvO1-3mco