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Retricted access

Research article

First published 2025

Parental Goals of Care for Children With Rare Diseases: A Content Analysis of Pediatric Advance Care Planning Conversations

Tamiko Younge, Hailey Moore, Jessica D. Thompkins [...]

American Journal of Hospice and Palliative Medicine®

Retricted access

Research article

First published 2025

“ Consider the Following Situation,” Parental Treatment Preferences for Children With Rare Diseases: A Content Analysis of Pediatric Advance Care Plans

Tamiko Younge, Hailey Moore, Jessica D. Thompkins [...]

American Journal of Hospice and Palliative Medicine®

Retricted access

Research article

First published 2018-5

Parent Experiences and Preferences When Dysmelia Is Identified During the Prenatal and Perinatal Periods: A Qualitative Study Into Family Nursing Care for Rare Diseases

Judith Johnson, Olivia Johnson, Jane Heyhoe [...]

Journal of Family Nursing

Open access

Research article

First published 2024

Health services interventions to improve the quality of care in rare disease: a scoping review

Cody Chou, Sydney O. Wiredu, Liesel Von Imhof [...]

Therapeutic Advances in Rare Disease

Open access

Review article

First published 2021

Utilizing telehealth to create a clinical model of care for patients with Batten disease and other rare diseases

Jessica F. Scherr, Charles Albright, Emily de los Reyes

Therapeutic Advances in Rare Disease

Retricted access

Research article

First published 2016-07

The Spectrum of Caregiving in Palliative Care for Serious,Advanced,Rare Diseases: Key Issues and Research Directions

Lynn S. Adams, Jeri L. Miller, Patricia A. Grady

Journal of Palliative Medicine

Open access

Editorial

First published 2025

Addressing rare diseases and access to surgical care in Brazil: a call to action

Ayla Gerk, Letícia Nunes Campos, Luiza Telles [...]

Therapeutic Advances in Rare Disease

Free access

Case report

First published 2020-7

Intensive care management of a rare case of pyrexia of unknown origin (Kikuchi-Fujimoto disease)

Helena Crawshaw, Kanaka S Rachakonda, Leah Kim [...]

Anaesthesia and Intensive Care

Open access

Review article

First published 2025

Integrated Care for People Living With Rare Disease: A Scoping Review on Primary Care Models in Organization for Economic Cooperation and Development Countries

Nada Vidic, Anna McGlynn, Fatemeh Abdi [...]

Journal of Primary Care & Community Health

Retricted access

Case report

First published 2017-01

Providing Palliative Care in Rare Pediatric Diseases: A Case Series of Three Children with Congenital Disorder of Glycosylation

Amy Trowbridge, Miriam T. Stewart, Eileen Rhee [...]

Journal of Palliative Medicine

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