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Abstract

Neuromuscular disorders (NMDs) present a large group of primary muscle weakness’ diseases that progressively affect the subjects’ walking and movements’ abilities. Associated extra-muscular involvements constitute chronic co-morbidities that disturb the patients’ quality of life. There are challenges to better serve NMDs’ chronic patients that require a multidisciplinary team of health care providers. Hence, it is of importance to discuss what approaches are taken to ensure high quality integrated-health measures that aim at advancing the standard care and management plans for these patients in Qatar. The tertiary prevention approach of carrier and prenatal detection or the primary prevention applying the preimplantation genetic diagnosis has a principal role in reducing the recurrence of NMDs in our families and community. Hence, the question up for discussion is whether our prevention genetic program serves the needs for such families. Newborn screening is implemented in Qatar for a pre-designed list of diseases. The panel discussion will address the potential need for a tailored screening program for treatable types of congenital dystrophies or myopathies. Moreover, patients’ voices are known to have a powerful influence on the heath authorities’ decision-making. Patient advocacy groups are groups dedicated to taking patient’s voices to the forefront, these groups are well acting worldwide, and so are we ready to start this experience here in Qatar?

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/content/papers/10.5339/qproc.2020.NMD.4
2020-09-15
2020-11-28
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http://instance.metastore.ingenta.com/content/papers/10.5339/qproc.2020.NMD.4
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