Publications by authors named "Dorica Dan"
Article Synopsis
- The European Reference Networks (ERNs) are collaborative virtual platforms for healthcare providers in Europe to address complex and rare diseases using the Clinical Patient Management System (CPMS) for secure consultations.
- After one year of using CPMS, the ERN ITHACA network became a top performer in telemedicine activity, sharing insights on 28 rare cases from various countries, while emphasizing the importance of data protection for patient care.
- The collaboration between the ERN ITHACA team, EU officials, and clinical genetics centers led to the development of a tailored CPMS, enhancing its effectiveness for specific telemedicine needs and improving care outcomes.
Bridging the gaps between health and social care for rare diseases is not only necessary but crucial to increase the life expectancy, quality of life and autonomy of people living with a rare disease, supporting them in the full realisation of their fundamental human rights.The complexity of rare diseases, their strong relation to disability and the current unmet social and daily life needs of people living with a rare disease must not be underestimated and require urgent attention from all stakeholders involved in care provision, from healthcare to social and community services.The Commission Expert Group Recommendations to Support the Incorporation of Rare Diseases into Social Services and Policies, adopted unanimously in April 2016, by the representatives of European Member States and the other rare disease stakeholders, clearly set the tone for the need to promote measures that facilitate multidisciplinary, holistic, continuous, person-centred and participative care provision to people living with rare diseases.
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