| The next edition will be held under the slogan "Sharing knowledge, training people" | After three intense days of training and outreach about rare diseases, the XIII International Congress on Rare Diseases, organized by the D'Genes Rare Diseases Association and the San Antonio de Murcia Catholic University (UCAM), closed last night.The figures support this training forum on rare diseases, which has been held from 24 to 26 November virtually.
It has had more than a thousand registered from twenty different countries and fifty speakers who during three days have addressed aspects of interest around rare diseases in areas such as diagnosis, research, orphan drugs, humanization or good practices.Among those registered were people from twenty different countries: Spain, Germany, Argentina, Chile, Mexico, Colombia, Ecuador, United States, Guatemala, Panama, Peru, Portugal, Uruguay, Venezuela, Brazil, Russia, Bolivia, Cuba, Italy and France.The first day spoke about rare diseases in the international context, being able to learn about projects and actions in this matter at the European level, and the challenges of the system to guarantee access to orphan drugs were also addressed.On the second day, the tables focused on diagnosis, advances in research and the importance of humanization and good practices in this regard was put on the table.Finally, the third day made it possible to learn about programs and projects to improve the quality of life of individuals and families with rare diseases, as well as resources for associations and good practices in education were shared.
In addition, three interesting workshops were developed on raising funds and resources for patient associations, a ketogenic diet in refractory epilepsy, and augmentative and alternative communication systems in early care.In addition, several symposia on specific pathologies were held in parallel during the three days: Lyme, Incontinence Pigmenti, Alagille Syndrome and No diagnosis.Likewise, 45 posters and oral communications were presented on different aspects related to rare diseases, from the health or social and educational fields.The president of DīGenes, Juan Carrión, highlighted during the closing the effort made by the organization to be able to shape a congress with the participation of a large number of speakers with a consolidated track record in the field of rare diseases where has been able to share knowledge and experiences.
Likewise, he highlighted the effort and enthusiasm of the scientific and organizing committee so that this congress is consolidated as a reference in the training of the area of ??rare diseases.The president of DīGenes would like to have a special thanks to UCAM and its president, José Luis Mendoza, and to the technical team that has been supporting the development of this event.Likewise, he had words of gratitude for sponsors and collaborators since he stressed that without their help this congress would not be possible, as well as the portfolio of services that D'Genes has been implementing in its comprehensive care centers.Finally, he ended by announcing that the next edition of the Congress will be held in November 2021 with the slogan "Sharing knowledge, training people."