The International Conference on Rare Diseases recommends a review of pre -marriage examinations

Dubai, February 11/ WAM/ The third international conference of the Emirates Association for Rare Diseases, which concluded its activities in Dubai yesterday, recommended the need to update the list of diseases covered in pre -marriage tests, to include diseases with a great health effect on the lives of individuals.

The conference stressed the importance of conducting a research study for the pre -marriage examination by using the genome examination, with a focus on the social and psychological aspects of these tests.

Participants in the conference – organized by the Emirates Association for Rare Diseases and lasted for two days – stressed the importance of establishing specialized rehabilitation centers for children in the northern Emirates, and developing insurance programs covering all treatment needs for rare diseases, including periodic follow -up, medicines, nutrition and rehabilitation.

Dr. Iman Tarim Al Shamsi, Chairman of the Conference, Consultant and Head of the Acting Department of Hematology and Oncology in Dubai Hospital, said that the two conferences recommended an increase in the number of practical workshops to train family doctors in genetic guidance, and to increase societal awareness of rare genetic diseases in innovative and easy ways.

She explained that the juvenile participants from the specialists proposed the establishment of a local “Pew Bank” for rare diseases to conduct research related to early diagnosis. They also recommended creating a box to support treatment and provide insurance plans that suit treatment needs for each satisfactory category.

For its part, Nafisa Tawfiq, Chairman of the Board of Directors of the Emirates Association for Rare Diseases and Chairman of the Organizational Committee of the Conference, stressed the importance of coordination and linking between local and government agencies at the country level that provides services for people with determination to provide more comprehensive programs depending on the database of these groups.

She pointed out that it was recommended to organize workshops that encourage patients and their families to express their personal experience and focus on supporting the psychological and social aspect, which is one of the most important factors for support for rare cases and diseases, and called on the relevant companies to join the association’s initiative to create an application that contributes to strengthening the elements of advocacy from patient support platforms, And programs linking families to get acquainted and exchange experiences, taking into account confidentiality in personal and medical information

During the conference, 7 scientific workshops were organized that covered multiple topics such as the functional combustion of doctors, emergency bleeding, food intervention in metabolic diseases, emergency metabolic cases, genetic consultations, and medical protocols for nursing workers.

The seventh workshop, titled “From Hospital Papers to Writing Platforms”, dealt with patient experiences and companions in hospitals, and the conference also gave the opportunity to attend the heroes of rare diseases directly to identify their stories, challenges and hobbies.

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