Passion fruit de Abona today celebrates its XII edition of the Conference on Rare Diseases in the Canary Islands, being the only municipality in the Archipelago that organizes a forum on these rare pathologies. The initiative, promoted by the Department of Health Promotion in collaboration with the Canary Islands Health Service (SCS) and the Spanish Federation of Rare Diseases (FEDER), is developed under the slogan Resignation and surrender for love, and refers to the figure and the role of the caregiver.
The appointment will be in the auditorium of the San Isidro Espacio Cívico (SIEC), from 9:30 a.m. to 2:00 p.m., with the assistance of groups, associations, affected people and families, as well as the general public. The inauguration will be carried out by the mayor, José Domingo Regalado, who is satisfied to resume this activity (the pandemic prevented it in 2020). It highlights that this edition will revolve around the issues of coexistence with affected people and the importance of the well-being of the caregiver, among other aspects. «Granadilla de Abona once again becomes a regional benchmark, always hand in hand with the institutions, associations and professionals, to join forces and resources together to help the well-being and quality of life of those who suffer from some type of rare disease ».
María de la O Gaspar, Councilor for Health Promotion, argues the purpose of exposing these pathologies to “contribute to raising awareness and serving as a platform for affected people and their families, to make your needs and concerns visible, in addition to exposing what is being worked on and developed in the Canary Islands at an institutional, health, social and associative level with regard to infrequent pathologies ». The mayor refers to the work that illustrates the poster this year and whose title, Planetarium, belongs to the artist María Elida Medina Montesinos, a neighbor of the municipality who suffers from Devic syndrome, also called optic neuromyelitis, who has wanted to collaborate with one of his pictorial works in this edition.
The objective of this Conference is to offer up-to-date information regarding associative movements and lines of action and research. In addition, the SCS will expose the Comprehensive Plan for Rare Diseases in the Canary Islands and FEDER will report on the relevance of networking and that all associations go hand in hand towards the same goal, which is none other than to support, guide, advise and help the affected people and their families.
Presentations
The day begins with the presentation on the Structure of the Comprehensive Plan for Rare Diseases of the Canary Islands, by the technician of the General Directorate of Assistance Programs of the SCS, Francisco Afonso; the president of the Association of Neuromuscular Diseases of the Canary Islands (Asenecan), Obdulia Falcón, who will speak about this year’s motto, Surrender and fight for love.
The presentation of the pilot project and study Existo, on the comprehensive analysis of the reality of people affected by rare diseases in the Canary Islands, is one of the attractions of this meeting. The president of the National Association for Disability, Rare Diseases and Social Integration, María del Carmen Hernández Cabrera, will make the presentation and, then, the psychological tools to cope with rare diseases, with the presence of the psychologist Verónica Doval Expósito. This XII Conference on Rare Diseases in the Canary Islands will end with the intervention of the author of the poster, María Elida Medina.
