Guest Blogger: 1st International Congress on Clinical Genetics And Genetic Counselling In Rare Diseases
The 1st International Congress on Clinical Genetics and Genetic Counselling in Rare Diseases was held in April 2015 in Seville, Spain. The Orphan Druganaut Blog is honored to have Cristina Payán, biotechnologist and specialist in rare diseases as Guest Blogger. Ms. Payán, Science Committee Chair of Genetic insidER and organizer of the meeting, writes a summary. For additional information, please reference the website or contact Genetic insidER at firstname.lastname@example.org.
The 1st International Congress on Clinical Genetics and Genetic Counselling in Rare Diseases was held in Seville, Spain, April 16-17, 2015. Ramaiah Muthyala, PhD., President and CEO of the Indian Organization for Rare Diseases (I-ORD) and Associate Director of the Center for Orphan Drug Development at the University of Minnesota, was the Guest of Honour.
Dr. Muthyala indicated the importance of these types of conferences and the support received in order to increase and improve networks among different actors in the rare disease space, in order to translate the problem of these pathologies to governments.
Another significant detail of the first edition of the Congress was the attendance of 30 top-level speakers in the rare disease field, specifically working on genetics of these pathologies and providing genetic counselling every day to patients and families, and the support received by public and private institutions both at the national and international level.
The 1st International Congress on Clinical Genetics and Genetic Counselling in Rare Diseases took place at NH Collection Hotel in Seville with about 60 attendees from different countries. At the conference’s round table sessions, diagnostic and genetic topics were discussed about the importance of new emergent technologies, such as NGS. Moreover, various ethical considerations were also discussed, and an emphasis was placed on the need for good practices in the communication of the genetic information to patients and families that “increasingly demand support and training, but above all, more empathy and sensitivity by clinical and sanitary professionals”.
For Pablo Valera, CEO of Genetic insidER and organizer of the Congress, the purpose of this scientific meeting has been to know that “there is a need to train clinical professionals and specialists in clinical genetics and genetic counselling, because genetic conditions and, specifically rare conditions, have a high impact on the individual’s health and result in increased morbidity and mortality, and without this training it won’t be possible to help patients to understand the implications of their hereditary diseases”.
Meeting Logo courtesy of Genetic insidER. Orphan Druganaut is a Meda Partner.
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