Publication:
Role of patients associations in connective tissue calcifiying diseases: a position statement from EuroSoftCalc.Net group

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Abstract
Patients have been showing a growing interest in taking active participation in decision making, and having the opportunity to drive clinical investigation. This is more common for patients who have a rare disease than for those with more prevalent diseases. The EuroSoftCalc.Net COST Action, a group of clinicians and researchers involved in the dystrophic calcification process held a meeting in which three representatives of patients' associations, coming from Portugal, France and Spain, discussed the role of patients and their associations, namely in the Action, and also the main concerns in their countries. The disparities in health care between European Union countries with regard to connective tissue calcifying diseases, and the existing conflicts of interest, were a matter of debate during the meeting. As a consequence of the presentations and the debate that followed, it became clear that, despite their countries, the main concerns of the patients are identical, namely a lack of specific therapy and follow-up clinical guidelines, delays in the diagnosis, difficulties in getting members to enrol to associations, and/or difficulties with doctors' explanations for the diseases. The attendees also agreed that EuroSoftCalc.Net group should help to set up new associations where no Patient Associations presently exist, and, furthermore, should release diagnosis and follow-up guidelines, especially helpful in countries, and/or for diseases, where no multidisciplinary consultations are available.
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Keywords
Connective tissue, Rare disease, Spain, Associations, Calcification, Tejido conectivo, Enfermedades raras, España, Asociación, Calcificación fisiológica
Citation
Valdivielso P, Jacinto M, Devernois G, Laplana J, García-Fernández M, Martin L. Role of patients associations in connective tissue calcifiying diseases: a position statement from EuroSoftCalc.Net group. Orphanet J Rare Dis. 2021 Feb 8;16(1):71