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"First National Meeting of Families, professionals and people with rare diseases" (29/08/2008)

The Association for Rare Disorders and Pervasive Developmental Totana (D'Genes) Totana welcomes the "First Meeting of Families, professionals and people diagnosed with rare diseases" in order to "create spaces for communication and exchange between professionals, family and patients.

In addition, this forum also seeks to be a speaker to raise awareness about public health issues posed by these diseases, "he explained from the association.

This meeting, which will run for 24, 25 and October 26 is also intended to highlight the importance of local associations, "by implementing concrete actions to share and learn about the different projects developed," they say.

The event will also be covered free of charge by the association for all those affected by ER who wish to attend

Thus, since the Association invites anyone who wishes to participate and to do so, D'Genes offers free accommodation and meals for people diagnosed with ER plus two companions.


The lines of work of the meeting were generally presented in the meeting of representatives of D'Genes with the board of the Spanish Federation for Rare Diseases ERDF.

Also, through FEDER be channeled contacts with the family around the country inviting them to participate in this meeting.

Similarly, D'Genes with the express support of the Hemophilia Association of the Region of Murcia, as its president, Manuel Moreno, said in a testimonial the level of involvement they have with this entity, and has given the use of permanent training center Hemophilia, located in the pond, which will house all the mourners.

This act has the institutional support of the ministries of Health, Labour and Social Policy, the general direction of Disability and the city of Totana.

Source: D’Genes

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