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Retricted access

Research article

First published 2019-12

Analysis of Potential Conflicts of Interest among Otolaryngologic Patient Advocacy Organizations in 2016

Neil S. Kondamuri, Vinay K. Rathi, Matthew R. Naunheim [...]

Otolaryngology–Head and Neck Surgery

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Review article

First published 2014-10

Financial Stability in Biobanking: Unique Challenges for Disease-Focused Foundations and Patient Advocacy Organizations

Russell L. Bromley

Biopreservation and Biobanking

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Research article

First published 2011-2

Generating sociability to drive science: Patient advocacy organizations and genetics research

Aaron Panofsky

Social Studies of Science

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Research article

First published 2006-05

A Review of the Alpha-1 Foundation: Its Formation,Impact,and Critical Success Factors

John W Walsh, Gordon L Snider, James K Stoller

Respiratory Care

Retricted access

Brief report

First published 2017

Stewarding Hope: The Evolving Landscape of Huntington’s Disease Science Communications

George J. Yohrling, Louise A. Vetter

Journal of Huntington's Disease

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Editorial

First published 2015-12

The Role of Patient Advocacy Organizations in Advancing Human Gene Therapy

Terence R. Flotte

Human Gene Therapy

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Meeting report

First published 2013-10

Patient Advocacy Organizations: Institutional Conflicts of Interest,Trust,and Trustworthiness

Susannah L. Rose

The Journal of Law,Medicine & Ethics

Open access

Research article

First published 2024

The MED13L Foundation strategic research plan: a roadmap to the future

Rachel Heilmann, Anna Pfalzer, Terry Jo Bichell [...]

Therapeutic Advances in Rare Disease

Open access

Review article

First published

Bladder Cancer Patient Advocacy: A Global Perspective

Diane Zipursky Quale, Rick Bangs, Monica Smith [...]

Bladder Cancer

Open access

Review article

First published 2024

The growing research toolbox for SLC13A5 citrate transporter disorder: a rare disease with animal models,cell lines,an ongoing Natural History Study and an engaged patient advocacy organization

Tanya L. Brown, Matthew N. Bainbridge, Grit Zahn [...]

Therapeutic Advances in Rare Disease

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