Rare disease patients need faster diagnoses, more accessible treatment and stronger support

Faster diagnosis, access to treatment and stronger support for families were the central demands at Serbia’s seventh Caring for Rare international conference in Belgrade.

Organized by the National Organization for Rare Diseases of Serbia, known as NORBS, the conference brought together experts, patient representatives, researchers, institutions and policymakers from Serbia, the wider region and Europe. Its stated aim was to turn shared experience and knowledge into practical solutions for people living with rare diseases and their families.

Experts estimate that between 350,000 and 400,000 people in Serbia face a rare disease, although only 12,600 patients currently appear in the national registry. The actual number is believed to be considerably higher. Across Europe, between 6,000 and 8,000 rare diseases are known, and an estimated 5% of the population lives with one.

The program included a NORBS Policy Forum on the future of rare-disease policy in Serbia, along with sessions on pulmonary hypertension, epidermolysis bullosa, X-linked hypophosphatemia, holistic family support, mental health and sustainable leadership for patient advocates. Specialists in genetics also discussed the challenges of diagnosing rare diseases that remain undiagnosed. Sessions examined how digital technologies and artificial intelligence could help patients.

Health Ministry Assistant Minister Nebojša Tasić announced that a draft Strategy for Rare Diseases had been completed. “The Health Ministry working group has prepared a draft Strategy for Rare Diseases, and it will be submitted to NORBS in the coming days, after which it will also be available to the public,” he said. He described it as a systemic framework for organizing care for people with rare diseases. NORBS also listed completing and adopting a new national program, absent since 2022, and securing a sustainable treatment budget among its priorities. The conference also presented a new children’s picture book designed to explain rare diseases to young readers.

“

The Health Ministry working group has prepared a draft Strategy for Rare Diseases, and it will be submitted to NORBS in the coming days, after which it will also be available to the public. What matters is that this is a systemic solution through which we will organize the entire concept of care for people with rare diseases.