RECOGNITIONS, OBSERVATIONS AND RECOMMENDATIONS OF THE NATONAL CONFERENCE ON DIAGNOSIS OF GENETIC DISORDERS IN BANGLADESH: PRESENT SITUATION AND FUTURE DIRECTIONS (HEREINAFTER REFERRED TO AS ‘THE CONFERENCE’) ORGANIZED BY INSTITUTE FOR DEVELOPING SCIENCE AND HEALTH INITIATIVES (IDESHI); NATIONAL INSTITUTE OF NEUROSCIENCES & HOSPITALS (NINS); CENTER FOR MEDICAL BIOTECHNOLOGY (CMBT), MIS,DGHS; BANGLADESH SOCIETY OF MEDICAL GENETICS (BSMG) ON 15 APRIL 2017 AT THE IPH AUDITORIUM, IPH BUILDING (1° FLOOR), MOHAKHALI, DHAKA ATTENDED BY 157 PARTICIPANTS FROM 38 INSTITUTIONS INVOLVED IN DIAGNOSIS, RESEARCH AND. ‘TREATMENT OF GENTIC DISORDERS IN BANGLADESH, The Conference recognizes and appreciates the encouragement and contribution made by 1. The Chief Guest, Prof Dr. A. K. Azad Khan, President, BADAS and Special Guests Prof. Dr. Abul Kalam Azad, Director General, DGHS; and Dr. John D. Clemens, Executive Director, icddr,b toward the success of the Conference. 2. The Session chairmen, the Key-note speakers, the presenters for enriching the value of this conference by their relevant and appropriate presentations. 3. Institute for developing Science and Health initiatives (ideSHi); National Institute Of Neurosciences & Hospitals (NINS); Center For Medical Biotechnology (CMBT), MIS,DGHS; Bangladesh Society Of Medical Genetics (8SMG) in sponsoring the conference. 4, The organizing committee in organizing the details of the conference 5, The various sub-committees especially the registration, logistics, program, tech support, publication and food committees for the detailed work done in order to have a successful conference. 6. The members of the press including radio, television and newspapers for their coverage in the media 7. The sponsors with financial help necessary for organizing the conference. The Conference recognizes and recommends that 1. Genetic disorders are a very significant problem in Bangladesh and that it causes a lot of suffering and distress to families of children with such diseases, especially when they are not sure of the diagnosis and the consequences of these diseases. 2. That of the genetic disorders thalassemia, congenital hypothyroidism, Down syndrome, organic acidemias, urea cycle disorders, mitochondrial disorders, neuromuscular diseases, Freidrich’s ataxia, Duchene and Becker muscular dystrophies, spinal muscular atrophy, fragile X syndrome, homocysteinuria, autism are often seen in patients in Bangladesh.3. That many of these diseases result in physical and/or mental disabilities in affected children thereby causing a lot of suffering and misery in these patients and their families. 4. That as the infant mortality is decreasing in Bangladesh fatalities due to non-communicable diseases including genetic disorders are increasing so much so that it will be soon become a major problem, 5. That diagnosis of many of these disorders can be done at the prenatal stage and with proper counselling distress may be avoided. 6. That many of these diseases result from consanguineous marriages and proper awareness and counseling as necessary to prevent proliferation of these diseases. 7. That of these diseases, some are treatable with proper drug, diet and counselling, some are manageable with proper advice and some are preventable. 8, That awareness programs in order to educate the public about genetic disorders and how to prevent them should be initiated preferably at the government level. 9. That awareness programs should be initiated to educate the general public about the deleterious effects of consanguineous marriages. 10. That newborn children should be screened at birth to check for inborn defects so that the families may be counselled and prepared for the eventuality of the disorders. 11. That newborn screening programs should be started at the National level as a routine feature. 12. That in Bangladesh there are a number of institutions who are trying to establish facilities for the diagnosis of these disorders but there is a general lack of knowledge of who is doing what and there is a need to set up collaborations among these institutions. 13. That most clinicians send samples abroad for tests when they suspect genetic disorders. Therefore, facilities for testing must be developed in Bangladesh to run the tests locally. 14. That specialized equipment necessary for the testing of such samples have not yet been established in Bangladesh and there is need to develop institutions equipped with HPLC, TMS, GCMS, Microarray, ELISA and DNA sequencing facilities including NGS 15. That different institutions in Bangladesh may be assigned to conduct specialized tests leading to increased efficiency, productivity and economy. 16. That although there is present in Bangladesh skilled expertise in molecular biology and genetics, there is a lack of trained genetic clinicians who are required to interpret identify and categorise patients with confidence. Therefore programs to train clinical geneticist should be initiated. 17. That trained genetic counseling support be introduced and emphasized. rine 1040 9 csseny Fades GO: Pri Prof. Dr. Quazi Deen Mohammad Dr. Firdausi Qadri Chairman, Organizinge6mmittee Chairman, Organizing Committee Secretary, Organizing Committee