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Open access

Research article

First published 2023-12

Pregnancy,childbirth and neonatal outcomes of women with rare inherited coagulation disorders

Lucy Jane McCann, Erin Scullion, Lauren Doy [...]

Obstetric Medicine

Retricted access

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

Free access

Research article

First published 2016

Quality of Life in Children and Adolescents With Rare Bleeding Disorders in Southern Iran

Sezaneh Haghpanah, Hassan Mohtadi, Mahboobeh Akbari [...]

Clinical and Applied Thrombosis/Hemostasis

Free access

Research article

First published 2015-5

Myocardial Infarctions and Other Acute Coronary Syndromes in Rare Congenital Bleeding Disorders

Antonio Girolami, Silvia Ferrari, Luisa Sambado [...]

Clinical and Applied Thrombosis/Hemostasis

Retricted access

Research article

First published 2010-1

The National Organization for Rare Disorders (NORD)

Stefanie Putkowski

NASN School Nurse

Retricted access

Research article

First published 2023-7

Development of a Palliative Care Approach for Primary Progressive Aphasia: My Experience as a Person Living With This Rare Disorder

Joanne T. Douglas

Journal of Palliative Care

Retricted access

Research article

First published 2023-1

“If not me,who?”: Awareness- and Self-Advocacy-Related Experiences of Adults With Diverse Rare Disorders

Emily F. Plackowski, Kathleen R. Bogart

Qualitative Health Research

Free access

Review article

First published 2012-4

Rare and Unusual Bleeding Manifestations in Congenital Bleeding Disorders

Antonio Girolami, Silvia Vettore, Elisabetta Ruzzon [...]

Clinical and Applied Thrombosis/Hemostasis

Free access

Research article

First published 2014-9

Comparison of Thrombin Generation Assay With Conventional Coagulation Tests in Evaluation of Bleeding Risk in Patients With Rare Bleeding Disorders

Omid R. Zekavat, Sezaneh Haghpanah, Javad Dehghani [...]

Clinical and Applied Thrombosis/Hemostasis

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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