Medycyna Paliatywna

Abstract

4/2024 vol. 16
Guidelines/recommendations

Challenges of palliative medicine in the healthcare of patients with rare diseases on the example of neurofibromatosis

  1. Instytut Nauk Medycznych, Uniwersytet Opolski, Opole
  2. Instytut Zdrowia Dr Boczarska-Jedynak, Neurologia i Medycyna Regeneracyjna, Oświęcim
Medycyna Paliatywna 2024; 16(4): 247–255
Online publish date: 2025/01/22
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Rare diseases are a significant social problem. They affect up to 8% of the total population, or about 350 million people of all ages. Most often, they are multisystem diseases with great clinical diversity, so they pose a diagnostic and therapeutic challenge. Knowledge of diagnostic criteria and treatment methods allows rapid implementation of therapy and reduces the risk of complications. In many cases, only symptomatic treatment is available. Currently, a diagnosis of neurofibromatosis is not a qualification for the patient to receive specialised palliative care, but cancers occurring during this group of diseases increase the likelihood of providing such services. It is common for these diseases to coexist with other disease entities, which requires the cooperation of specialists from different medical fields. The answer to patients’ needs is integrated palliative care.
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