Tag: canary islands

It is estimated that about 140,000 Canaries suffer the diseases considered to be rare.

-scientific coffee “ dialogue on rare diseases in the Canary Islands ”, organized by the foundation of the Federation of rare diseases (ERDF) and chaired by the Coordinator of strategy of rare diseases in the Canary Islands, Mila Santana, brought together patients, doctors and relatives of these diseases minority.

-Director of the ERDF FoundationMercedes Pastor, noted that the meeting “ brand an earlier and a later in the implementation of the strategy on minority ailments in Canary ”.

– Community strategy is included in the national strategy for diseases, weird that the Government had launched the year past.

Santa Cruz de Tenerife, November 2009- The means exist but lack systematize them. It is the conclusion to which came the participants of the “ dialogue on rare diseases in the Canary Islands ” which met in the Hotel school Santa Cruz, Santa Cruz de Tenerife, the Coordinator of the strategy of rare diseases, Ministry of health, Mila Santana, the representatives of the Spanish Federation of rare diseases (ERDF)Mercedes Pastor and Pilar Gomariz, as well as around fifty patients, doctors and relatives of these ailments little frequent.

The meeting, aimed at shoring up the Foundation for the practical development of the strategy of Canarian of rare diseases within the framework of the national strategy launched last year, mostly heard the testimonies of those affected, which coincided in pointing out “ loneliness ” in which they live. Therefore, asked that efforts be intensified to achieve greater coordination between the involved departments of the Administration, the creation of a service for efficient information and a registration of rare diseases, and stressed the necessity of multidisciplinary teams in tackling these diseases.

The pediatrician Mila Santana took note of complaints from patients and promised to take action and plan a Canarian strategy that works in accordance with the guidelines established by the European Union, to equate the approach of these ailments with the rest of pathologies.

For his part, Mercedes Pastor, Director of the ERDF Foundation, said that “ this meeting marks a before and a later in the implementation of the strategy ” and stressed the importance of “ coordination between the various agents involved such as the Administration, researchers, health professionals, patients and pharmaceutical industry associations ”. Also noted “ the need to listen to those affected as those aspects of the planning which are currently little developed and systematized can be improved through their testimonies. “