D'Genes and FEDER Totana Murcia thanks QUADS Barcelonista Action and Peņa de Totana the organization of living day "Road to Mary 2009" held last Sunday 25th January.
In developing this activity proceeded to formalize the coexistence between members of the rock Barcelona de Totana, Action QUADS partners, family and affections of the Association and FEDER Gene D'Murcia.
The route was to perform an action of solidarity slogan awareness to announce the Day of Rare Diseases to be held on February 29, 2009.
The co-organizers had a vest printed with the logo and image for this global event.
As an act for the participants of the various associations and clubs signed a document of accession to the Global Compact for Rare Diseases.
We also appreciate that during the last meeting in Barcelona in Totana rocks the presidents of these also showed their commitment and support to people with rare diseases and their environment.
Partnership also Genes and FEDER D'Murcia now has more than a hundred firms to join the Global Compact for Rare Diseases.
In the words of President Perez de Tudela Naca this act has served "to promote the image of the First World Day for Rare Diseases in the Region of Murcia and to feel one in the event you are organizing other associations, while passing a day of living, eating dishes (crumbs and pipirrana) and knowing the nature reserve of Sierra Maria - Los Velez, particularly the beautiful scenery of Piza.
Similarly thanked "by addressing the social needs of families affected by rare diseases and feel more integrated into society with this and other events.
For us, these events mean to normalize our situation and not be excluded from society "
