Volume 5 Supplement 1

5th European Conference on Rare Diseases (ECRD 2010)

Open Access

Cross-border healthcare? The Polish experience

Orphanet Journal of Rare Diseases20105(Suppl 1):O29

DOI: 10.1186/1750-1172-5-S1-O29

Published: 19 October 2010

Patients with rare diseases are spread all over large distances, resulting in difficulty to find proper medical experts and centres and use new modern therapies. Cross-border healthcare enables equality in availability of medical services and the best medical care all over the world for affected patients regardless of their place of residence. In our centre, the cross-border healthcare is based mainly on informal personal cooperation in taking care of the patients with inborn errors of metabolism. We consult foreign patients from Eastern European countries; we diagnose the Polish patients through analysis done in materials sent abroad, take care of foreign affected children during their stay in Poland and continue the medical care of migrating patients. Some examples include, when a doctor visits a patient and consultations are performed by a metabolic team from our centre, in Riga and Vilnius, where among thirty two and twelve patients with suspicion of rare diseases, five and two diagnoses, respectively, were finally established. Moreover one of our patients diagnosed as hyperammonemia type II in the newborn period, at the age of thirty days was transferred by plane from our hospital to Heidelberg for liver cell infusions (the new modern procedure), which was successfully done with subsequent liver transplantation and a good outcome. In order to to improve access to the cross-border healthcare, the following are needed: formal regulations among Member States, right for reimbursement for services provided abroad, establishing of European networks of reference centres for rare diseases, collecting data concerning availability and quality of medical management in order to enable comparable monitoring of cross-border healthcare and also developing e-health by including information technology in healthcare.

Authors’ Affiliations

(1)
The Children Memorial Health Institute, Head of Dept Metabolic Diseases, Endocrinology and Diabetology

Copyright

© Sykut-Cegielska; licensee BioMed Central Ltd. 2010

This article is published under license to BioMed Central Ltd.

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