On the occasion of Rare Disease Day on 28 February 2026, which has the motto “Equity” – justice and equal opportunities in medical care – the German Society for Otorhinolaryngology, Head and Neck Surgery (DGHNO-KHC) is drawing attention to paragangliomas in the head and neck area. These rare tumors, also known as glomus tumors, are usually benign, but can have serious consequences if left untreated.

Paragangliomas arise from cells of the autonomic nervous system and occur mainly in the carotid artery, in the middle ear or at the lateral base of the skull. Despite their benign nature, they often displace or destroy neighboring nerves and vessels. Early symptoms such as pulsating ringing in the ears or hearing loss are often not recognized or misinterpreted. In the advanced stage, there is a risk of facial nerve paralysis, speech and swallowing disorders, poor arm lifting or complete hearing loss. Life-threatening complications can occur when it grows into the brain space.

Diagnosis is made by MRI and CT as well as nuclear medicine DOTA-PET/CT scans to rule out further tumors in the body. Since paragangliomas can be genetically determined, a human genetic assessment is recommended. Treatment requires close interdisciplinary cooperation, especially with endocrinology and neurosurgery. Paragangliomas of the lateral base of the skull are particularly challenging because of their proximity to important nerves and vessels.

Prof. Dr. Stephan Hackenberg, Clinic Director of the ENT Clinic at the University Hospital Würzburg, emphasizes the need for early referral to specialized centers in the event of suspicion in order to minimize risks and achieve optimal therapy results. Univ.-Prof. Dr. Thomas Hoffmann, President of the DGHNO-KHC, calls for greater sensitivity for rare diseases in primary care. This is the only way to avoid diagnostic delays and gain valuable time.

The motto “Equity” is a reminder that equal access to diagnostics and therapy is not a vision of the future, but a prerequisite for good care. Many of those affected experience years of uncertainty with misdiagnoses. The DGHNO-KHC wants to disseminate knowledge about paragangliomas more widely, spread modern procedures and promote interdisciplinary exchange.

Save the date: The 97th Annual Meeting of the DGHNO-KHC from May 13 to 16, 2026 in Ulm will be held under the motto “The Fascination of Head and Neck Surgery” and will be dedicated, among other things, to current developments in the diagnosis and therapy of complex head and neck tumors, including robotics, AI-supported procedures and skull base surgery.

Editor: X-Press Journalistenbüro GbR

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