Recorded: EIP 2013 ● Language: English ● Duration: 12 minutes ● Topic: Pediatric Rare Diseases

     
 

Speaker: FATMA AK JASMI, MBBS, FRCPC, FCCMG, Assistant Professor of
Paediatrics, Faculty of Medicines and Health, Science, UAE University, United Arab Emirates

  
     
  Learning Objectives: At the end of the session participants will understand: (1) How to address families denial to diagnosis and treatment (2) Challenges in management of multiple affected siblings and their access to multidisciplinary subspecialties (3) Challenges in access to disease modifying treatment (HSCT, ERT) (4) How to improve patient compliance with treatment