Travelling with cystic fibrosis: recommendations for patients and care team members.

There are no European Guidelines on issues specifically related to travel for people with cystic fibrosis (CF). The contributors to these recommendations included 30 members of the ECORN-CF project. The document is endorsed by the European Cystic Fibrosis Society and sponsored by the Executive Agency of Health and Consumers of the European Union and the Christiane Herzog Foundation. The main goal of this paper is to provide patient-oriented advice that complements medical aspects by offering practical suggestions for all aspects involved in planning and taking a trip. The report consists of three main sections, preparation for travel, important considerations during travel and at the destination, and issues specific to immunocompromised travellers. People with CF should be encouraged to consult with their CF centre prior to travel to another country. The CF centre can advise on the necessary preparation for travel, the need for vaccinations, essential medications that should be brought on the trip and also provide information relating to CF care in the region and plan of action in case of an emergency.

[Patient-centred care in rare diseases. A patient organisations' perspective]. / Patientenzentrierte Versorgung bei seltenen Erkrankungen. Perspektive von Patientenorganisationen.

Patients living with rare diseases have special common needs. Although the 5,000-6,000 rare diseases are very different, many patients share the experience of a time-consuming and sometimes frustrating journey towards diagnosis, the lack of established standards of care and foremost the search for competent physicians. Because of their complexity, rare diseases mostly demand an interdisciplinary and cross-sectional medical care. The model of the "patient-centred health-care value chain" explains how primary (prevention, diagnosis, treatment) and secondary activities (exchange of information, quality management, identification of unmet needs, research and development) contribute to the patient benefit applying a holistic approach. This model thereby prevents an isolated view from the perspective of single health-care providers. A survey to which 21 German patient-organisations in the rare-disease field contributed, was performed to obtain insight into preferred medical care concepts and preferences in the way that care is provided. The results clearly suggest that the patient organisations have a clear view on how disease-specific care should be delivered; however, in reality those preferences seem to be met to a minor extent in Germany at present. According to patient organisations, rare-disease patient care should always be a patient- centred, interdisciplinary and holistic effort. The solidaric health-care system in Germany provides an excellent basis for this kind of medical care. However, a new patient- rather than system-oriented approach is needed to make it work in reality.