:

Sietske A L van Till1, Arianne Bouman2, Tjitske Kleefstra3

  • 1Dept. of Public Health, Program for Medical Ethics, Philosophy and History of Medicine, Erasmus MC, University Medical Centre Rotterdam, the Netherlands.

概括

抚养患有克莱夫斯特拉综合征 (KLEFS1) 的孩子带来了重大挑战,影响了家庭的福祉,需要改善社会支持. 父母需要量身定制的情感支持和可访问的服务,以获得更好的照顾和孩子的结果.

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