Advocating for a RARE Child: Perspectives and Tools for Caregivers

 

Families caring for medically complex children face almost unfathomable decisions, often with no prior experience to guide their thinking and acting. Second only to the clinician expertise on which they rely is their need to be connected to other families. From these families and palliative care clinicians, they discover that they are not alone, that others are available to support them. They also come to understand that their intimate knowledge of their child along with their values and goals of care belong at the front and center of the choices they are being asked to make.

 

This is the premise of Courageous Parents Network (CPN), a national nonprofit organization established and staffed by rare disease parents with a mission to empower, orient and support our families.

 

CPN offers, free of charge and 24/7, access vis the Web and mobile app to more than 500 short videos of caregivers and clinicians relating their experience on a wide range of relevant topics; downloadable guides on subjects from navigating the hospital to caring for siblings to advance care planning; a blog written by Network members; podcasts; and live-streamed events featuring families and other experts discussing contemporary issues in caring for children with complex illness. The organization participates in research being conducted by colleagues, authors articles/papers, speaks at Grand Rounds and conferences, and annually presents the Courageous Provider Awards which recognize clinicians providing exceptional family-centered care in circumstances of serious childhood illness. (Clinicians will also find a section of the website dedicated to their specific needs and interests.)

 

For more information visit Courageous Parents Network. Registration is encouraged but not required (except for the Clinician Portal), and members receive CPN’s bi-monthly newsletter.

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