The Rare Disease Day 2017

5.dan m1 hrabrisa

The Rare Disease Day 2017 theme is research. The Rare Disease Day slogan is 'With research, possibilities are limitless'.

Imagine going to see your doctor only to be told that they don’t know what is happening to your body, that they don’t know what your disease is. Imagine that they can diagnose your disease but tell you that there is no cure or even treatment available. Or that the treatment available is not fully effective but just the best possible option. You don’t know how you or your loved one will manage life from one day to the next, nor how the disease will affect your work or school life.

Imagine what it would be like to live without answers to your most basic questions.

This is the reality for many rare disease patients. Research can lead to the identification of previously unknown diseases and can increase understanding of diseases. It can enable doctors to give a correct diagnosis and provides information to patients about their disease. It can lead to the development of new innovative treatments and in some cases a cure.

Research is the key. It brings hope to the millions of people living with a rare disease across the world and their families.

On 28 February 2017, the tenth edition of Rare Disease Day will see thousands of people from all over the world come together to advocate for more research on rare diseases.

In 4 cities in Serbia: Beograd, Novi Sad, Niš and Kragujevac, the action "Tree of positive thoughts" took place for International Rare Disease Day. During a week before the Day, we raised awareness about the existence of rare diseases, the problems many rare disease patients have and potential solutions. The action was organized by the National Organization for Rare Diseases Serbia – NORBS and supported by associations Lil’ brave one (@hrabrisa) and Life (@zivot). We also had the support of student’s associations of Faculty of special education and rehabilitation, National Association of Pharmacy Students of Serbia and European University Pharmacy Students’ Association.

The biggest thanks we owe to the citizens which responded to the action, came to our tree, wrote a message and place it to the tree. As a result we have 397 messages of which 320 leafed the tree in Mercator and 77 leafed the tree at the Faculty of Medicine. Among the messages the dominant are ones for health, innovative medicines and messages of support. The action drew attention to the problems of people leaving with rare disease and the fact that they need the support of all of us. Many thanks to everyone who were involved in this action.