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Open access

Review article

First published 2026

Challenges and opportunities for the use of telehealth in rare disease diagnosis,treatment,research,and education: key opinion leader interviews by the IRDiRC telehealth task force

Melissa A. Parisi, Adam L. Hartman, Mary Catherine V. Letinturier [...]

Therapeutic Advances in Rare Disease

Retricted access

Research article

First published 2022-6

Exploring patient education unmet needs for rare and complex connective tissue and musculoskeletal diseases: A survey of health care providers’ and patients’ expectations in Europe

Meryem-Maud Farhat, Alain Cornet, Charissa Frank [...]

Chronic Illness

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Article commentary

First published 2019-07

A Planetary Health Lens for Rare Diseases in Refugee Populations and Innovating Systems Medicine Education

Deniz Ağırbaşlı, Mehmet Ağırbaşlı

OMICS: A Journal of Integrative Biology

Open access

Research article

First published 2022-04-13

The Rare Disease Research Scholars Program: A training curriculum for clinical researchers with mixed methods evaluation study

Debra S. Regier, Jennifer A. Weaver, Nancy Cheng [...]

Translational Science of Rare Diseases

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Review article

First published 2021-6

Challenges in Evaluating Safety and Efficacy in Drug Development for Rare Diseases: A Review for Pharmacists

Kanya K. Shah, Stephen Kogut, Angela Slitt

Journal of Pharmacy Practice

Open access

Research article

First published 2025-12

Family and patient education for children with spina bifida: A qualitative study

Verena Wutzlhofer, Sarah Mildner, Barbara Seebacher

Health Education Journal

Retricted access

Research article

First published 2025-4

Community Social Networking for Ehlers–Danlos Syndrome

Elisabeth F. Callen, Tarin L. Clay, Wendy Cogan [...]

Health Education & Behavior

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Research article

First published 2011-5

Policy Framework for Rare Disease Health Disparities

Pamela Holtzclaw Williams

Policy,Politics,& Nursing Practice

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Research article

First published 2017-7

Prioritizing Rare Diseases: Psychological Effects Influencing Medical Decision Making

Johanna Wiss, Lars-Ake Levin, David Andersson [...]

Medical Decision Making

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Research article

First published 2025

Socioeconomic factors and post-traumatic stress disorder in Polish caregivers of children with rare genetic conditions

Weronika Wojtowicz, Joan Deus Yela, Albert Fornieles Deu

Journal of Health Psychology

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