Bahrain hosts international workshop on rare diseases

The Princess Al-Jawhara Center, affiliate to the Arabian Gulf University in Manama, is hosting an international scientific workshop to discuss the mechanisms of preparing a national and Gulf registry for rare diseases, as well as a Gulf plan to deal with rare diseases using the aid of international expertise. 
The international event will be launched at nine in the morning of April 7, 2017, at the Princess Al-Jawhara Center in Manama.
This follows the national campaign through which the Princess Al-Jawhara Center seeks to contribute to the international efforts bringing attention to rare diseases and promoting personal medicine that seeks to determine the genetic characteristics of every case and tailoring its treatment.
This workshop is the first of its kind in the Kingdom of Bahrain, bringing together international expertise in the fields of genomics, scientific research, public health, and patient rights advocacy. All will discuss ways to place rare diseases as a priority in the agenda of health care.
President of the International Workshop’s Organising Committee, Consultant Medical Geneticist, Dr. Cristina Skrypnyk, said, "This international assembly aims to benefit from international expertise, particularly European expertise, in establishing a register of rare diseases and accessing legislation and regulations followed in dealing with rare diseases as a priority in the health care agenda of European countries. Through this workshop, we seek to develop policies to deal with rare diseases, providing better care for patients and their families, and promoting scientific research in the field of rare diseases."
She added that the workshop is working to establish a network of cooperation in the GCC countries, uniting academic researchers and expert doctors in this field to begin developing joint plans to deal with rare diseases.
The workshop will address many topics such as discussing rare diseases in the age of the genome, their impact on health care, EU strategies in the field of rare diseases, national plans to deal with rare diseases, record of rare diseases: the Italian and Romanian experience, best practices in the field of rare diseases and quality assurance standards for genetic testing, international cooperation in research of rare diseases, a glimpse of the global and national network of rare disease patients, medicine for the treatment of rare diseases, and pharmaceutical application technologies for the treatment of rare diseases.
The workshop will feature the participation of distinguished international experts in this field, such as Prof. Milan Macek Jr., Head of National Coordination at the Center for Rare Diseases in the Czech Republic, former President of the European Society of Human Genetics and member of the Expert Group of the European Commission on Rare Diseases; Dr. Dominica Tarisio, Director of the National Center for Rare Diseases in Italy and member of the Expert Group of the European Commission on Rare Diseases; Psychologist Dorica Dan, President of the Romanian National Alliance for Rare Diseases and a member of the National Council of Rare Diseases in Romania; alongside Dr. Theodora Katsila, member of the Greek National Genetic Database Association, in addition to Dr. Cristina Skrypnyk, Consultant Medical Geneticist at Princess Al-Jawhara Center of the Arabian Gulf University and member of the European Association of Rare Diseases.

Source: BNA