Author

Sandra Courbier

Observed names: Courbier Sandra, Courbier, Sandra

Institution: European Organisation for Rare Diseases

Observed institution: European Organisation for Rare Diseases

ORCID: 0000-0003-1357-134X

Observed ORCID: 0000-0003-1357-134X

OpenAlex ID: A5081865952

Share and protect our health data: an evidence based approach to rare disease patients’ perspectives on data sharing and data protection - quantitative survey and recommendations

2019 · Sandra Courbier, Rebecca Dimond, et al. · Orphanet Journal of Rare Diseases · 154

Juggling care and daily life: The balancing act of the rare disease community

2017 · Sandra Courbier, Erwan Berjonneau · 17

Learning from the Pandemic to Improve Care for Vulnerable Communities: The Perspectives and Recommendations from the Rare Disease Community

2021 · Raquel Castro, Erwan Berjonneau, et al. · International Journal of Integrated Care · 9

Preferences, attitudes and views regarding genetic newborn screening (gNBS) for rare diseases: a systematic review of the literature and synthesis from 2009 to 2022

2026 · Sylvia Martin, Gergana Kyosovska-Peshtenska, et al. · Orphanet Journal of Rare Diseases · 7

2021 · Raquel Castro, Myriam de Chalendar, et al. · Springer eBooks · 6

Rare disease patients’ opinion on the future of rare diseases

2021 · Jessie Dubief, Anna Kole, et al. · 4

Rare disease patients’ participation in research. A Rare Barometer survey

2018 · Courbier Sandra, Berjonneau Erwan · 2

Additional file 4 of Preferences, attitudes and views regarding genetic newborn screening (gNBS) for rare diseases: a systematic review of the literature and synthesis from 2009 to 2022

2026 · Martin, Sylvia, Kyosovska-Peshtenska, Gergana, et al. · Figshare

Additional file 5 of Preferences, attitudes and views regarding genetic newborn screening (gNBS) for rare diseases: a systematic review of the literature and synthesis from 2009 to 2022

2026 · Martin, Sylvia, Kyosovska-Peshtenska, Gergana, et al. · Figshare

Additional file 2 of Preferences, attitudes and views regarding genetic newborn screening (gNBS) for rare diseases: a systematic review of the literature and synthesis from 2009 to 2022

2026 · Martin, Sylvia, Kyosovska-Peshtenska, Gergana, et al. · Figshare

Preferences, attitudes and views regarding genetic newborn screening (gNBS) for rare diseases: a systematic review of the literature and synthesis from 2009 to 2022

2026 · Martin, Sylvia, Kyosovska-Peshtenska, Gergana, et al. · Figshare

Additional file 3 of Preferences, attitudes and views regarding genetic newborn screening (gNBS) for rare diseases: a systematic review of the literature and synthesis from 2009 to 2022

2026 · Martin, Sylvia, Kyosovska-Peshtenska, Gergana, et al. · Figshare

Additional file 1 of Preferences, attitudes and views regarding genetic newborn screening (gNBS) for rare diseases: a systematic review of the literature and synthesis from 2009 to 2022

2026 · Martin, Sylvia, Kyosovska-Peshtenska, Gergana, et al. · Figshare

Integrated Care for Rare Diseases

2025 · Raquel Castro, Myriam de Chalendar, et al. · Springer eBooks

Integrated Care for Rare Diseases

2025 · Raquel Castro, Myriam de Chalendar, et al. · Springer eBooks

Access to treatment: unequal care for European rare disease patients. A Rare Barometer survey.

2017 · Courbier Sandra

Works count: 22

Citation count: 199

H-index: 5

I10-index: 2