At Saturday, April 13, 2013, individual rare disease patients, the Croatian Society of Patients with Rare Diseases and the National Organisation of Rare Diseases Serbia (NORDS) came together. At the meeting they listened to a presentation on Pompe Disease and the journey Pompe patients world wide are undertaking to get treatment, to get good care and support to live their lives. The title of the presentation was ‘Getting Our Voice Heard’ an important message for all rare diseases. Mrs Vlasta Zmazek, President of the Croatian Society of Patients with Rare Diseases and board member of EURODIS, joined the meeting and discussed the importance to work together and to share each others knowledge and expertise.
About 20 patients and families were present, 5 of them having Pompe Disease. Those 5 came from Slovenia, Croatia, Serbia and the Netherlands to share experiences among each other, to get to know other rare disease patients and to discuss issues related to rare diseases.
As the Balkan countries are small, rare disease patients especially know they have to cross their borders. This is exactly what they are doing. Meetings in the different countries are held regularly and they also support each others Fund Raising Events. Of course there is still a lot to do, but good contacts are established, networks are being maintained and developed, active talks to the governments are taking place and our voice is being raised.
Rare Disease Patients from Slovenia, Croatia and Serbia meet in Zagreb