The Department of Social Care and Support Association of Rare Disease Genes D'closed the year 2014 with a total of 215 medical visits.
This care is part of the service portfolio of the Multidisciplinary Center "Celia Carrión Pérez de Tudela" located in the Murcia town of Totana, and is coordinated with WIS of the Spanish Federation for Rare Diseases FEDER.
Of registered queries, 64 were conducted in person, by telephone 66, 73 through social networks and the web of the association, 10 via focal area of ​​the entity and the remaining 2 were made by whatsaap.
As to the merits, consultations from 11 different regions and even Latin American countries like Argentina, Ecuador, Peru, Venezuela and Colombia were met.
With regard to the issues focused consultations, most of the questions revolved around knowing the services provided by D'Genes, meet others affected, disease information, reference centers and associations.
Each query is logged formulated by the association in a confidential database.
At present in the database are no registered 147 different rare diseases for which there is a greater prevalence of Steinert myotonic dystrophy, neurofibromatosis type I and Arnold Chiari Malformation
The heads of the Social Care D'Genes highlight the positive balance of this activity is an indicator for the health and growth of the association and the growth of knowledge and information on rare diseases, allowing networking solid to share information and to those affected by any of these low-prevalence diseases and their families are not alone but feel supported and informed.
Since the association D'Genes to all those affected are invited by a rare disease and their families to use this service where they provide information about the disease, referral centers and associations.
To do this you can contact D'Genes in mobile 968076920 or 696141708 or through correoinfo@dgenes.es.
