30 Speakers Attend 1st International Congress on Clinical Genetics & Genetic Counseling in Rare Disease

Ramaiah Muthyala, President and CEO of the Indian Organization for Rare Diseases (I-ORD), was guest of honour at the Event.

The 1st International Congress on Clinical Genetics and Genetic Counselling in Rare Diseases was held in Seville 16 and 17 April and was attended by PhD. Ramaiah Muthyala, president and CEO of I-ORD and Associate Director of the Center for Orphan Drug Development at the University of Minnesota.

PhD. Muthyala indicated the importance of this kind of Conferences and the support received in order to increase and improve networks among different actors in Rare Diseases and 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 Diseases 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 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 and had the presence of about 60 attendees of different countries that, during different conferences and round table sessions, covered several diagnostic and genetic topics relevant nowadays and discussed about the importance of new emergent technologies 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, 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 in the individual health and result in increased morbidity and mortality, and without this training won’t be possible to help patients to understand the implications of their hereditary diseases”

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