Implementation of an advance directive focus in a Chronic Multi-Organ Rare Disease Clinic.

Background: Education about an advance directive is frequently not addressed in the outpatient, ambulatory care setting. The objective of this study was to identify patients that do not have an advance directive in a Chronic Multi-Organ Rare Disease Clinic model, and define the role of a social worker in providing advance care planning (ACP).

Methods: The Chronic Multi-Organ Rare Disease Clinic in-corporates a multi-disciplinary team to provide outpatient care to over 600 patients.

Chronic Multiorgan Rare Disease: The Role of the Nurse Practitioner as a Leader of the Healthcare Team.

Value in healthcare must focus on accessibility, quality, and affordability. This article describes how a healthcare team provides value by meeting the needs of a rare disease patient and underscores the importance of a chronic multiorgan rare disease home. A nurse practitioner can ensure that barriers to evaluation are removed and communication is prioritized in order to provide accessible and affordable care to a patient with rare disease without jeopardizing quality of care.