RT Journal Article
T1 Role of patients associations in connective tissue calcifiying diseases: a position statement from EuroSoftCalc.Net group
A1 Valdivielso, Pedro
A1 Jacinto, Marta
A1 Devernois, Guillemette
A1 Laplana, Jorge
A1 García-Fernández, Maria
A1 Martin, Ludovic
K1 Connective tissue
K1 Rare disease
K1 Spain
K1 Associations
K1 Calcification
K1 Tejido conectivo
K1 Enfermedades raras
K1 España
K1 Asociación
K1 Calcificación fisiológica
AB 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.
PB BioMed Central, Springer Nature
YR 2021
FD 2021-02-08
LK http://hdl.handle.net/10668/4576
UL http://hdl.handle.net/10668/4576
LA en
NO 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
DS RISalud
RD Apr 4, 2025