Rare Disease Day in Croatia ?
Croatia's first Rare Disease Day celebrtion was in 2009, where patient representatives paid a visit to the President. Since then, support has continued to grow each year, and the event is now backed by the First Lady of Croatia and is used to mobilise policy makers and the general public. The country also recently adopted a National Plan to improve care for rare disease patients. The plan is a huge step towards improving the status and quality of life for people all over Croatia who are living with rare diseases.
In 2015, events were held in nine Croatian cities. The President of the Republic of Croatia and the Ministry of Health hosted information stands, awareness activities, and natioanal media campaigns.
The Croatian National Alliance for Rare Diseases has been active since 2002, and brings together over 300 individual members living with a rare disease, along with some 17 patient organisations, and encompassing more than 400 rare disorders. They can be contacted directly to help you find a patient organisation locally which may have more information about a specific rare disease or disorder. Find their contact information at the bottom of this page. The Croatian Help Line for Rare Diseases was launched by the National Alliance in coordination with Rare Disease Day in 2011 to provide information and extra help and support to patients and their family members. It can be reached on +385 8009966.
You can also get involved! Do you know of any events not listed here? Email us at firstname.lastname@example.org.