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

Alicja Dąbrowska; Aleksandra Morajko; Magdalena Boczarska-Jedynak; Agnieszka Kluczna

doi:10.5114/pm.2024.146801

eISSN: 2081-2833
ISSN: 2081-0016

Medycyna Paliatywna/Palliative Medicine

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4/2024
vol. 16

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abstract:

Guidelines/recommendations

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

Alicja Dąbrowska

¹

,

Aleksandra Morajko

^{1, 2}

,

Magdalena Boczarska-Jedynak

²

,

Agnieszka Kluczna

¹

Instytut Nauk Medycznych, Uniwersytet Opolski, Opole
Instytut Zdrowia Dr Boczarska-Jedynak, Neurologia i Medycyna Regeneracyjna, Oświęcim

Medycyna Paliatywna 2024; 16(4): 247–255

DOI: https://doi.org/10.5114/pm.2024.146801

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.

keywords:

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

Alicja Dąbrowska 1 , Aleksandra Morajko 1, 2 , Magdalena Boczarska-Jedynak 2 , Agnieszka Kluczna 1

palliative care, neurofibromatosis, rare diseases

Alicja Dąbrowska

¹

,

Aleksandra Morajko

^{1, 2}

,

Magdalena Boczarska-Jedynak

²

,

Agnieszka Kluczna

¹