A novel palliative care intervention for caregivers of children and adolescents with rare diseases has shown preliminary success at helping families talk about potentially challenging medical decisions before a crisis occurs.
from
https://healthnews010.tumblr.com/post/186693135368
From https://johnher1.blogspot.com/2019/07/families-of-children-with-rare-diseases.html
from
https://johnher1.wordpress.com/2019/08/01/families-of-children-with-rare-diseases-open-to-advanced-care-plans-with-caregiver-support/
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