The IX International Congress of Rare Diseases, which under the motto "Occupying the present, researching for the future" is celebrated until next November 20 in Murcia, has started this morning with a successful participation, given that in this edition are more Of eight hundred and fifty people registered, of which about 640 will follow in person and about three hundred people, from twenty-five different countries, will do so online.
This meeting is organized by the Association of Rare Diseases D'Genes and the Catholic University of San Antonio de Murcia (UCAM), where it is held.
In addition, it also has the co-organization of the delegation in Murcia of the Spanish Federation of Rare Diseases (FEDER), the Association of Relatives and Affected Lipodistrofias (AELIP) and the Spanish Association of Chronic Adrenal Hyperplasia.
The president of D'Genes and FEDER, Juan Carrión, expressed his satisfaction at the fact that this is a consolidated annual meeting in the field of rare pathologies as a frame of reference for the exchange of knowledge and experiences among patients, relatives, specialists, researchers, Future professionals, representatives of the administration and the pharmaceutical industry.
In fact, it is worth noting that over the course of these days more than 50 speakers will be present and around 50 associations of patients will be represented.
Carrión emphasized that the motto of the congress, "Taking care of the present, researching for the future", reflects that "research remains the most important pillar in which we have to focus our efforts, a research that allows us to offer a light of hope to all those People who have lived for years with a rare disease and also those who face them for the first time.
However, despite the fact that research will be the focus of this international reference, he pointed out that aspects such as "the importance of specialized registries and reference units, the need to continue to educate in the Respect, equity in access to treatment or labor equality. "
The congress has started this morning with the testimonies of four people living with rare diseases, two of them affected and two other mothers of patients.
In particular, 15-year-old Elisa García Hernández explained how her life has been with a rare disease.
Carmen Serrano Carrillo, the mother of a child with Fragile X syndrome, and Vanesa Gomila, whose daughter has generalized congenital lipodystrophy, has also been involved. She has narrated in an emotional way the pilgrimage in search of information and the sensation of feeling "with less rights That the others, in unequal conditions, with fewer options for having touched my daughter a rare disease. "
Finally, César Díez Rivero, a young student of 20 years who is one of the four Extremadurans afflicted by APERT Syndrome, has appealed to continue research on rare diseases and has asked for reference centers for people with their illness and with others Pathologies, while at the same time giving voice to the need to facilitate inclusive education.
The inauguration ceremony was also attended by the president of the UCAM, José Luis Mendoza;
The Minister of Health of Murcia, Encarna Guillén;
The general director of Professional Organization of the Ministry of Health, Carlos Jesus Moreno;
The president of AELIP, Naca Eulalia Pérez de Tudela;
And the director of D'Genes, Miguel Angel Ruiz.
The morning session of the congress has also hosted a roundtable discussion on the role of autonomic registers in the State Registry of ER, the Information Service in Rare Diseases and the Comprehensive Care Plan in ER of the Region of Murcia Or socio-health needs studies have been approached in rare pathologies through the presentation of the Enserio III project or the conclusions of the Rare Disease Observatory's analysis.
Likewise, this afternoon addresses aspects related to social services and inclusion and integral care.
In the next few days there will also be talk about diagnosis, social and health care and networking, social work, updates on rare diseases and the IV Symposium on Lipodystrophies, the First Conference on Congenital Adrenal Hyperplasia and the 1st National Meeting of Relatives and people with Incontinence Pigmenti.