Ferreira Vanessa - Portuguese Association for Congenital Disorders of Glycosylation (CDG) and related Rare Metabolic Diseases (APCDG-DMR), Portugal.

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论文共 26 篇作者统计合作学者相似作者

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Resilience in patients and family caregivers living with congenital disorders of glycosylation (CDG): a quantitative study using the brief resilience coping scale (BRCS)

Joana Poejo,Ana Isabel Gomes, Pedro Granjo,Vanessa dos Reis Ferreira

ORPHANET JOURNAL OF RARE DISEASESno. 1 (2024)

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Revisiting the immunopathology of congenital disorders of glycosylation: an updated review

Carlota Pascoal,Rita Francisco, Patrícia Mexia, Beatriz Luís Pereira, Pedro Granjo,Helena Coelho, Mariana Barbosa,Vanessa Dos Reis Ferreira,Paula Alexandra Videira

Frontiers in immunology (2024): 1350101-1350101

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Resilience in patients and family caregivers living with congenital disorders of glycosylation (CDG): a quantitative study using the brief resilience coping scale (BRCS)

Joana Poejo,Ana Isabel Gomes, Pedro Granjo,Vanessa dos Reis Ferreira

Orphanet Journal of Rare Diseasesno. 1 (2024): 1-10

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A Community-Based Participatory Framework to Co-Develop Patient Education Materials (PEMs) for Rare Diseases: A Model Transferable across Diseases

Marta Falcão,Mariateresa Allocca, Ana Sofia Rodrigues,Pedro Granjo,Rita Francisco,Carlota Pascoal,Maria Grazia Rossi,Dorinda Marques-da-Silva,Salvador C M Magrinho,Jaak Jaeken, Larisa Aragon Castro,Cláudia de Freitas,

Int J Environ Res Public Health（2023）

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Congenital disorders of glycosylation (CDG): state of the art in 2022

Rita Francisco,Sandra Brasil, Joana Poejo,Jaak Jaeken,Carlota Pascoal,Paula A. Videira,Vanessa dos Reis Ferreira

Orphanet journal of rare diseasesno. 1 (2023): 1-9

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Patient-reported outcomes and quality of life in PMM2-CDG

Anna N Ligezka,Anab Mohamed,Carlota Pascoal,Vanessa Dos Reis Ferreira,Suzanne Boyer,Christina Lam,Andrew Edmondson,Wirginia Krzysciak,Raphael Golebiowski,Judit Perez-Ortiz,Eva Morava

Molecular Genetics and Metabolism（2022）

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A Participatory Framework for Plain Language Clinical Management Guideline Development

Rita Francisco,Susana Alves, Catarina Gomes,Pedro Granjo,Carlota Pascoal,Sandra Brasil,Alice Neves,Ines Santos, Andrea Miller,Donna Krasnewich,Eva Morava,Christina Lam,

Int J Environ Res Public Health（2022）

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The road to successful people-centric research in rare diseases: the web-based case study of the Immunology and Congenital Disorders of Glycosylation questionnaire (ImmunoCDGQ)

Rita Francisco,Sandra Brasil,Carlota Pascoal,Jaak Jaeken, Merell Liddle,Paula A. Videira,Vanessa dos Reis Ferreira

Orphanet J Rare Dis（2022）

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Epidemiology of congenital disorders of glycosylation (CDG)—overview and perspectives

Ana Piedade,Rita Francisco,Jaak Jaeken,Peymaneh Sarkhail,Sandra Brasil,Carlos R. Ferreira,Tatiana Rijoff,Carlota Pascoal, Alexandre Gil, Ana Beatriz Lourenço, Marta Abreu, Mafalda Gomes,

Journal of Rare Diseasesno. 1 (2022): 1-19

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A Community-Led Approach as a Guide to Overcome Challenges for Therapy Research in Congenital Disorders of Glycosylation

Rita Francisco,Sandra Brasil,Carlota Pascoal,Andrew C Edmondson,Jaak Jaeken,Paula A Videira,Cláudia de Freitas,Vanessa Dos Reis Ferreira,Dorinda Marques-da-Silva

INTERNATIONAL JOURNAL OF ENVIRONMENTAL RESEARCH AND PUBLIC HEALTH（2022）

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