{"id":680,"date":"2020-12-17T20:05:28","date_gmt":"2020-12-17T18:05:28","guid":{"rendered":"https:\/\/rijetke-bolesti.com\/?page_id=680"},"modified":"2025-04-23T12:25:06","modified_gmt":"2025-04-23T10:25:06","slug":"vanjski-suradnici-i-volonteri","status":"publish","type":"page","link":"https:\/\/rijetke-bolesti.com\/en\/nas-tim\/vanjski-suradnici-i-volonteri\/","title":{"rendered":"External Collaborators & Volunteers"},"content":{"rendered":"

External Collaborators & Volunteers<\/strong><\/h2>\n\n\n\n
<\/div>\n\n\n\n

The Educational-Rehabilitation Faculty,<\/strong> Voluntary Work Course within the Rehabilitation Program<\/p>\n\n\n\n

School of Midwifery Zagreb for MDRB<\/strong><\/p>\n\n\n\n

School of Nursing Vinogradska<\/strong><\/p>\n\n\n\n

Social Work Study Center at the Faculty of Law, University of Zagreb,<\/strong> within the course Social Work with People with Disabilities \u2013 Practice<\/p>\n\n\n\n

<\/div>\n\n\n

Student Section for Rare Diseases<\/h3>\n

The Student Section for Rare Diseases has been bringing together medical students from the University of Zagreb\u2019s Faculty of Medicine for 6 years, providing responses to various medical inquiries from members of the Croatian Alliance for Rare Diseases (HSRB), as well as individuals living with rare diseases and their family members. In this way, the initiative aims to ease the process for those affected by rare diseases by offering them valuable medical insights and support. Through this collaboration, students are able to contribute to the well-being of those in need, making information and guidance more accessible.<\/p>\n

The students were awarded the Rector\u2019s Award from the Faculty of Medicine, University of Zagreb for their volunteer work.<\/p>\n

\"\"<\/h2>\n

\u00a0<\/h2>\n

The Student Help Line for Rare Diseases Project \u2013 Recipient of the Rector's Award for Socially Beneficial Work in the Academic and Wider Community<\/h3>\n

The free Helpline for Rare Diseases, 0800 9966, provides assistance to over 1,000 users annually. The professional staff addresses inquiries related to rights in social welfare, healthcare, pension systems, education, and other sectors. They handle requests, complaints, and questions concerning transportation, provide updates, organize student internships with users, arrange social activities such as theater visits, connect individuals with the same diagnosis within Croatia and the region, educate other professionals in helping professions, and offer individual or group psychological counseling to users.<\/p>\n

\"\"<\/p>\n

When it comes to medical information (such as details about diseases, treatment methods, and available therapies), student volunteers from the Faculty of Medicine, University of Zagreb play an indispensable role in the operation of the Rare Disease Helpline, a project they have been involved in since 2014.\u00a0Student Rare Disease Helpline<\/em><\/strong>\u00a0has been operational for six consecutive years, continually enhancing its work year by year. In response to inquiries about rare diagnoses, the students provide detailed and verified information, which is highly valuable to the users. In their work, the students demonstrate responsibility, professionalism, and motivation for working with rare diseases.\u00a0Student Rare Disease Helpline\u00a0<\/em>has four senior volunteers who have been involved for several years, as well as thirteen new volunteers. The senior volunteers guide the new volunteers in their work and assist them in answering newly received cases. When writing information about a rare disease, which is the most common task, the volunteers typically search the following websites: Genetic and Rare Diseases Information Center (GARD), National Institutes of Health (NIH), and Orphanet. For information they are unable to find, they consult doctors specializing in rare diseases or specific fields.\nIn addition to searching for 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 1st Student Symposium on Rare Diseases this year, in observance of Rare Disease Day, at the Faculty of Medicine.<\/p>\n

\"\"<\/p>\n

The first head of the helpline was Neven Obradovi\u0107-Kurid\u017ea, followed by Nikola \u0160o\u0161tar, both of whom were former active volunteers of the Students' Rare Disease Helpline and are now medical doctors. Since 2014, the number of volunteers on the helpline has continually fluctuated due to the graduation of senior students and the enrollment of new volunteers. When sixth-year students complete their studies and start working as doctors, they pass on the responsibility for the operation of the Students' Rare Disease Helpline to younger colleagues, who, through their enthusiasm and dedication, strive to elevate the work of the helpline each year and honor the trust placed in them by their senior colleagues. Such a handover of duties occurred just a few days ago when the previous head of the helpline, Josip Stoji\u0107, also a very active volunteer of the Students' Rare Disease Helpline, completed his studies and secured employment as a doctor. The project was diligently prepared by eleven students: Josip Stoji\u0107, Vana Vuki\u0107, Tomislav Smoljo, Lorena Podgorski, Ema Kova\u010devi\u0107, Ema \u0160\u0107ulac, Mia Kova\u010devi\u0107, Dorotea Sinjeri, Nika Barbara Pravica, Mirta \u0110uzel, and Dorotea Kozi\u0107.<\/p>\n

\"\"<\/p>\n

In their six years of operation, the students of the helpline have demonstrated an exceptional level of professionalism, conscientiousness, and responsibility in their work. We believe they are deserving recipients of the Rektor\u2019s Award\u00a0\u201cAward for Socially Useful Work in Academia and the Broader Community.\u201d<\/em>They earn our recognition every day, and we are deeply grateful for the assistance they provide to this vulnerable group. We hope that the Rektor\u2019s Award\u00a0<\/em>will serve as an additional motivation, encouraging them for future endeavors, and inspiring even greater student involvement in socially beneficial work. We thank them for their work and additional efforts that help raise awareness within the academic and broader communities about the issues surrounding rare diseases, which are still not widely understood.<\/p>","protected":false},"excerpt":{"rendered":"

Vanjski suradnici i volonteri Edukacijsko – rehabilitacijski fakultet u sklopu programa Rehabilitacija, kolegij Volonterski rad \u0160kola za primalje Zagreb za MDRB \u0160kola za medicinske sestre Vinogradska Studijski centar Socijalnog rada Pravnog fakulteta Sveu\u010dili\u0161ta u Zagrebu u sklopu kolegija Socijalni rad s osobama s invaliditetom –…<\/p>","protected":false},"author":2,"featured_media":0,"parent":674,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"content-type":"","footnotes":""},"class_list":["post-680","page","type-page","status-publish","hentry"],"yoast_head":"\nVolonteri i vanjski suradnici - Hrvatski savez za rijetke bolesti<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/rijetke-bolesti.com\/en\/nas-tim\/vanjski-suradnici-i-volonteri\/\" \/>\n<meta property=\"og:locale\" content=\"en_GB\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Volonteri i vanjski suradnici - 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