The European Network of Rare Disease Helplines (ENRDHL) was established by EURORDIS and its partners with the aim of providing support and facilitating the exchange of experiences and information among national helplines across Europe. Currently, the network comprises 17 European helplines, with new countries joining upon meeting the necessary criteria.

Croatia signed the resolution to join the European Network of Rare Disease Helplines (ENRDHL) in 2011. A decision was made for the Croatian Rare Disease Helpline to begin operations in January 2012, following the guidelines of ENRDHL and participating in the annual analysis of caller profiles, rare diagnoses, call purposes, and responses provided. Once a year, a representative of the Croatian Alliance for Rare Diseases attends joint workshops with all representatives of ENRDHL.

Since 2013, the Croatian Alliance for Rare Diseases has employed its first specialist, a social worker, and today, the Rare Disease Helpline is staffed by two social workers and a psychologist who provide psychosocial support to over 1,000 regular users and an average of 100 new users annually. In eight years of operation, a total of 7,814 inquiries have been answered.

The professionals respond to inquiries about rights related to social welfare, healthcare, pension systems, education, and other areas, handle requests, complaints, questions related to transportation, provide updates, organize student internships with users, arrange social activities such as theater visits, connect individuals with the same diagnosis in Croatia and the region, educate other professionals in helping professions, and offer individual or group psychological counseling to users.

For medical inquiries (such as information about the disease, treatment methods, and available therapies), medical students from the Faculty of Medicine in Zagreb, who became involved in 2014, play a crucial role in the operation of the Rare Disease Helpline. The Students' Rare Disease Helpline has been active for six consecutive years and continuously enhances its operations each year. The student volunteers provide detailed, verified information on rare diagnoses, which is invaluable to users.

The student volunteers demonstrate a high level of responsibility, professionalism, and motivation when working with rare diseases. Currently, the Students’ Rare Disease Helpline consists of four senior volunteers, who have been active for several years, and thirteen new volunteers. Senior volunteers mentor the new volunteers and assist them in addressing newly received cases. When tasked with preparing information about a rare disease, which is the most frequent scenario, they typically consult the following authoritative websites: Genetic and Rare Diseases Information Center (GARD), National Institutes of Health (NIH), and Orphanet.

In instances where the information cannot be found, the volunteers consult medical professionals specializing in rare diseases or specific fields. In addition to gathering all relevant information, writing expert articles, and actively participating in national conferences on rare diseases and other public events organized by the Croatian Alliance for Rare Diseases and the Society for Rare Diseases within the Croatian Medical Association (HLZ), the student volunteers also organized the inaugural Student Symposium on Rare Diseases this year, in observance of Rare Disease Day, at the Faculty of Medicine.