Click the different SUBJECT TITLES below to find out more about each.

Bereavement

Losing a child, whatever the circumstances, is never easy. Some rare diseases are life-shortening or life-threatening. Losing your child may be unexpected, it may happen quickly, giving you little time to prepare. It may happen slowly, giving you more time to prepare but bringing you other challenges such as experiencing anticipatory grief. You may go through many different emotions and find it very hard to come to terms with your loss.

DNR

DNACPR stands for Do not Attempt Cardiopulmonary Resuscitation. You may have heard it referred to as a DNR (Do not resuscitate) order. DNACPR decisions must be made on a person-by-person basis and must not be made for a group of patients. They are not legally binding but rather are a tool to tell doctors, nurses or paramedics not to attempt CPR.

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Understanding Rare Disease  /  Adapting to a Rare Disease Diagnosis  /  Living with a Rare Disease  / 
Rare Disease Acronyms