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The event, which is being followed by the internet in various countries, has brought together more than 600 people among patients, relatives, health specialists, researchers and institutions

"I suffer and have suffered a lot with my daughter's illness but she has taught me to fight and persevere," "People with rare diseases are no less than anyone," "My parents and I have fought for an inclusive education despite My limitations, "are some of the testimonies that have offered relatives and affected by a rare disease this morning at the Catholic University of Murcia, within the framework of the IX International Congress of Rare Diseases organized by the Association D'Genes, which will continue until Next Sunday, and where they have called for more health coordination and research.

Under the motto 'Taking care of the present, researching for the future', this new edition has begun, in which Juan Carrión, president of the D'Genes Association;

José Luis Mendoza, president of the UCAM;

Encarna Guillén, Minister of Health of the Region of Murcia;

Carlos Moreno, General Director of Professional Organization of the Ministry of Health, and Naca Eulalia Pérez de Tudela, president of the Association of Relatives and Affected Lipodistrofias (AELIP).

Similarly, the Congress holds the Fourth Symposium of Lipodystrophies, the First Conference of Congenital Adrenal Hyperplasia, and the First National Meeting of Relatives and People with Pigmenti Incontinence.

More than 640 people have registered face to face with this event, and it has been followed by Internet, in more than 25 countries.

For Juan Carrión, this is an event that places the Region of Murcia "a world reference in the formation of rare diseases," and added that "Murcia is a pioneer for the work that is being led by the Ministry of Health "in this matter.

D'Genes was born in 2008, and has established itself as a reference in the comprehensive care for people and families with rare diseases.

"To date, it is serving more than 140 people in direct care representing 85 different rare diseases," said the president, who also recalled that the association has also extended its work through delegations in the region: Thanks to the generosity of the UCAM we have a point located in this University, another delegation in Campos del Rio, Comarca del Noroeste and Alhama, and we have a future project that is to consolidate the center of reference to the attention to XFragil and other diseases Rare in Murcia city ".

On the other hand, José Luis Mendoza, president of the UCAM, has stated that from the Catholic University of Murcia "we are committed to quality research, and we consider it to be fundamental, and in fact we are working on a great investigation through Juan Carlos Izpisua and other researchers so that these diseases can be treated, can be cured. "

Mendoza also called for the government to continue to focus on research in this area.

Encarna Guillén, Minister of Health of the Region of Murcia, has stressed that this Congress "places the Region at the epicenter of care and research of rare diseases," and has said that in a few weeks will present a Comprehensive Care Plan For Rare Diseases, "in which they have collaborated and continue to do all the agents involved and that includes the actions to be developed to fully cover their needs."

Carlos Moreno, Director General of Professional Management of the Ministry of Health, has highlighted the importance of events such as this "to give visibility to rare diseases."

Source: UCAM