Portal de Totana
www.portaldetotana.com
The support service affected by rare diseases and their families have attended D'partnership genes during the first six months of this year a total of 58 queries mostly affected in the region of Murcia.
This service is coordinated with the information and guidance service ERDF Murcia 163 people attended last year 2013.
Within these consultations have registered 40 different rare diseases.
The most commonly used means for conducting consultations have been email-face appointments, telephone and social networks.
Social networks and the Internet have enabled us contact people from other regions and even Latin American countries like Argentina or Colombia.
In relation to the same period last year were recorded from January to June 35 this year while consultations has increased the number to 58.
Since the association D'genes invite all those affected by a rare disease and their families using this service you provide them information about the disease, referral centers and associations.
You can contact us on the phone from 968076920 to 696141708 or email info@dgenes.es
Source: D´genes
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