Today's reality in Croatia is that we still don't have a Registry of people living with a rare disease or a National plan on rare diseases to support our efforts in the field of civil rights protection for such patients. There are hundreds of people that need to be recognized. Still, there is no law in Croatia that deals specifically with rare diseases or orphan drugs. Even so no legal frame has been set that would explain the complexity of this issue. From a standing point of a patient organization, our main objective is to improve the quality of life for our members. To do so, we need to make those people more visible to the health care and the social care systems of our country. Fitting their needs to current systems hasn’t been working so far, thus we need to make some room for them creating new and more adjustable rules and laws. Creating a National plan for rare diseases seems as a logical way to succeed in our efforts. Also, collecting data on the diseases and the patients suffering from them as well as organizing that data into a well conducted Registry, seems to be our main priority. The Croatian Society for Rare Diseases, since its establishment in the Year 2006., has been working on raising awareness on the existing problems of rare disease patients in their every day living. We have been especially focusing on providing them with three essential services – medical advice, psychological support and information on social rights that they have in our country. Keeping in mind the diversity and complexity of rare diseases, we come to realize that not much can be done by providing single efforts. Only with combining international collaboration and including of all national stakeholders, we can come to terms with this giant that grows through isolation, ignorance and financial deficiency in the health systems.