Sage Journals: Discover world-class research

Retricted access

Research article

First published 2020-9

Making Knowledge Hereditary: Public–Private Partnership Drives Progress in Rare Disease Community

Amanda Mulally, Val Bias, Barbara Konkle [...]

Social Marketing Quarterly

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Research article

First published 2009-11

Current key priorities for the rare diseases patients community in the EU

Flaminia Macchia-Bangsgaard, Yann Le Cam

Pharmaceuticals Policy and Law

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News

First published 2020-5

NIH to Study Impact of COVID-19 on Rare Disease Community

Inside Precision Medicine

Open access

Research article

First published 2025-11

The Experiences of Patients With Rare Diseases in Pennsylvania: A Community-Based Study

Jonathan H. Sussman, Mert Marcel Dagli, Shira L. Wald [...]

Public Health Reports®

Retricted access

Research article

First published 2011-8

HTA's and access to rare diseases therapies: The view from the PID community

J. Prevot, D. Watters

Pharmaceuticals Policy and Law

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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

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

Retricted access

Research article

First published 1998-11

The European Commission’s public health strategy and its proposed programme on rare diseases

Paul W.J. Peters, Bernard C. Merkel

International Journal of Risk & Safety in Medicine

Open access

Research article

First published 2024-11

The impact of music on health and wellbeing of children and young people with rare diseases in healthcare settings: A scoping review

Shannon Sinnott, Niamh Buckle, Alison Sweeney [...]

British Journal of Music Therapy

Open access

Research article

First published 2021

The Odyssey from Symptom to Diagnosis of Pulmonary Hypertension from the Patients and Spouses Perspective

Bodil Ivarsson, Anders Johansson, Barbro Kjellström

Journal of Primary Care & Community Health

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