{"id":13845,"date":"2026-10-21T13:11:07","date_gmt":"2026-10-21T11:11:07","guid":{"rendered":"https:\/\/evropskakuca.rs\/izvestaj\/svetlo-nade-za-retke-bolesti-zasto-je-evropski-put-kljuc-za-bolji-zivot-pacijenata-u-srbiji\/"},"modified":"2026-10-21T13:18:18","modified_gmt":"2026-10-21T11:18:18","slug":"svetlo-nade-za-retke-bolesti-zasto-je-evropski-put-kljuc-za-bolji-zivot-pacijenata-u-srbiji","status":"publish","type":"izvestaj","link":"https:\/\/evropskakuca.rs\/en\/izvestaj\/svetlo-nade-za-retke-bolesti-zasto-je-evropski-put-kljuc-za-bolji-zivot-pacijenata-u-srbiji\/","title":{"rendered":"A Light of Hope for Rare Diseases: why the European path is key to a better life for patients in Serbia"},"content":{"rendered":"

While the children play, mothers finally have someone to talk to about what is rarely said out loud: diagnoses, fears and the struggle with the system. This kind of gathering in Novi Pazar was organised by the association \u201cIskra\u201d<\/a>, with the support of Europe House Novi Pazar<\/a>.<\/p>\n

Living with a rare disease is a struggle with the unknown, a race against time and a daily maze through the health and social system. In a world where a single diagnosis affects only a few people per million inhabitants, solidarity and networking are not just a humane wish. Sometimes they are the only way to survive.<\/p>\n

Parents of children with rare diseases in Novi Pazar recognised the importance of joining forces and this year founded \u201cIskra\u201d, which now has around 50 members. According to their data, 184 people with a rare disease are registered in Novi Pazar, including cystic fibrosis, Rett syndrome, porphyria and epidermolysis bullosa, known to the public as butterfly children.<\/p>\n

What challenges do families face?<\/strong><\/p>\n

Muamera Rahi\u0107<\/strong>, president of the association, says that children with rare diseases are often left out by their peers because their surroundings know little about these diseases. The biggest problems are late recognition of symptoms, delays in diagnosis and difficult access to therapy and medicines. Families also lack clear information about the rights they can exercise and whom to turn to.<\/p>\n

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\u201cFamilies often go through a long process of diagnosis, treatment and exercising various rights. There are also major financial challenges, especially when it comes to expensive therapies, medicines, medical aids, travel to health institutions and other costs. That is why we believe that families need not only financial help, but also continuous psychological, social and institutional support. It is important for a family to have someone to turn to and not to have to find its way through the entire system alone\u201d<\/em>, Rahi\u0107 stresses.<\/p>\n<\/blockquote>\n

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That is why, with the support of Europe House Novi Pazar, they organised a gathering of parents. The turnout was large. Mothers shared experiences, fears and happy moments, while the children played in the meantime.<\/p>\n

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\u201cThrough meetings like this we build community, break down prejudice and show that rare diseases should not mean social isolation\u201d<\/em>, Rahi\u0107 concluded.<\/p>\n<\/blockquote>\n

What can Serbia learn from the European Union?<\/strong><\/p>\n

In recent years Serbia has been improving the position of patients, and European Union practice shows the direction in which to go. The umbrella association NORBS (National Organisation for Rare Diseases of Serbia)<\/a> brings together 42 member associations, 14 supporting ones and around 240 individual members, and since 2015 it has run a free Helpline for psychosocial support to patients across the country. NORBS points to progress in public policies, diagnostics and the budget for therapies, but also to problems: difficult diagnostics, an incomplete National Registry of patients that doctors do not fill in sufficiently, and poor coordination between the health, social and education sectors.<\/p>\n

In the EU, the patient is at the centre of the system. The field of rare diseases develops through national plans, specialised centres of expertise, patient registries, availability of so-called orphan drugs and cross-border cooperation. European Reference Networks<\/a>, which connect specialist centres across Europe, play an important role.<\/p>\n

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\u201cThe essence of this approach is that the patient does not always have to physically travel to an expert in another country, but that, with the patient\u2019s consent and in line with national rules, doctors can consult colleagues from other European centres\u201d<\/em>, NORBS stresses.<\/p>\n<\/blockquote>\n

Through membership in European organisations and the SHARE-RD project, NORBS works on health literacy and on bringing domestic policies closer to European standards. At the same time, it warns about the realistic limits.<\/p>\n

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\u201cIn practice, therapies in Serbia are mainly provided through the domestic health system and the decisions of competent institutions, while European cooperation can contribute to better diagnostics, expert consultations, education, advocacy and policy alignment\u201d<\/em>, NORBS adds.<\/p>\n<\/blockquote>\n

The goal of associations such as NORBS and \u201cIskra\u201d is to transfer successful European models to local communities. The closer Serbia gets to the European Union, the closer and more accessible the hand of support from European experts, funds and health networks will be to those who need it most.<\/p>\n

European values of solidarity, equality and the right to treatment are the way to a society in which no child and no family will be left alone.<\/p>\n","protected":false},"excerpt":{"rendered":"

While the children play, mothers finally have someone to talk to about what is rarely said out loud: diagnoses, fears and the struggle with the system. This kind of gathering in Novi Pazar was organised by the association \u201cIskra\u201d, with the support of Europe House Novi Pazar. Living with a rare disease is a struggle […]<\/p>\n","protected":false},"author":11,"featured_media":13846,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"class_list":["post-13845","izvestaj","type-izvestaj","status-publish","format-standard","has-post-thumbnail","hentry"],"acf":{"Grad":"Novi Pazar","Vreme":"20261021","vreme_zavrsetka":"20261021","test_ripiter":null,"Kategorija":false},"_links":{"self":[{"href":"https:\/\/evropskakuca.rs\/en\/wp-json\/wp\/v2\/izvestaj\/13845","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/evropskakuca.rs\/en\/wp-json\/wp\/v2\/izvestaj"}],"about":[{"href":"https:\/\/evropskakuca.rs\/en\/wp-json\/wp\/v2\/types\/izvestaj"}],"author":[{"embeddable":true,"href":"https:\/\/evropskakuca.rs\/en\/wp-json\/wp\/v2\/users\/11"}],"version-history":[{"count":2,"href":"https:\/\/evropskakuca.rs\/en\/wp-json\/wp\/v2\/izvestaj\/13845\/revisions"}],"predecessor-version":[{"id":13848,"href":"https:\/\/evropskakuca.rs\/en\/wp-json\/wp\/v2\/izvestaj\/13845\/revisions\/13848"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/evropskakuca.rs\/en\/wp-json\/wp\/v2\/media\/13846"}],"wp:attachment":[{"href":"https:\/\/evropskakuca.rs\/en\/wp-json\/wp\/v2\/media?parent=13845"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}