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Experiences of parents with children with congenital disorders of glycosylation: What can we learn from them?

Article

Background: Congenital disorders of glycosylation are a group of rare metabolic, genetic diseases that
cause severe cognitive and physical impairments. Owing to the rarity of this condition, the experiences of
these parents are poorly understood.
Objective: This study aimed to explore parents’ experiences of caring for a child or young adult with
congenital disorders of glycosylation.

Disorders (CDG Types): All CDGs
Year: 2021
Authors: Carolina Cardão, Luísa Barros, Rita Francisco, Dorinda Silva, Vanessa Dos Reis Ferreira
Keywords: CDG, Congenital Disorders of Glycosylation, Qualitative study, Parents’ experience, Rare Diseases

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RFT1-CDG Infographic

Infographic

Disorders (CDG Types): RFT1-CDG
Year: 2021
Authors: Marta Falcão, Carlota Pascoal, Ananías González, Maria Isabel Quiroga, Vanessa Dos Reis Ferreira
Languages: English, Italian, Portuguese, Spanish
Keywords: CDG, Congenital Disorders of Glycosylation, RFT1-CDG

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ALG9-CDG Infographic

Infographic

Disorders (CDG Types): ALG9-CDG
Year: 2021
Authors: Sandra Brasil, Rita Francisco, Duncan Webster, Vanessa Dos Reis Ferreira, Prof. Jaak Jaeken
Languages: English, Italian, Portuguese, Spanish
Keywords: CDG, Congenital Disorders of Glycosylation, ALG9-CDG

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ALG12-CDG Infographic

Infographic

Disorders (CDG Types): ALG12-CDG
Year: 2021
Authors: Sandra Brasil, Rita Francisco, Duncan Webster, Vanessa Dos Reis Ferreira, Prof. Jaak Jaeken
Languages: English, Portuguese, Spanish
Keywords: CDG, Congenital Disorders of Glycosylation, ALG12-CDG

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ALG11-CDG Infographic

Infographic

Disorders (CDG Types): ALG11-CDG
Year: 2021
Authors: Sandra Brasil, Rita Francisco, Shannon Willardson, Vanessa Dos Reis Ferreira, Prof. Jaak Jaeken
Languages: English, Italian, Portuguese, Spanish
Keywords: CDG, Congenital Disorders of Glycosylation, ALG11-CDG

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SSR4-CDG Infographic

Infographic

Disorders (CDG Types): SSR4-CDG
Year: 2021
Authors: Marta Falcão, Carlota Pascoal, Andrew, Wanda and Marta Kadziolka, Tatiana Soffiati, Andrew Edmondson, Vanessa Dos Reis Ferreira, Prof. Jaak Jaeken
Languages: English
Keywords: CDG, Congenital Disorders of Glycosylation, SSR4-CDG

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GMPPA-CDG Infographic

Infographic

Disorders (CDG Types): GMPPA-CDG
Year: 2021
Authors: Rita Francisco, Sandra Brasil, Heather Ross Parente, Vanessa Dos Reis Ferreira, Prof. Jaak Jaeken
Languages: English, Italian, Portuguese, Spanish
Keywords: CDG, Congenital Disorders of Glycosylation, GMPPA-CDG

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PIGG-CDG Infographic

Infographic

Disorders (CDG Types): PIGG-CDG
Year: 2021
Authors: Rita Francisco, Carlota Pascoal, Marta Sanchéz, Vanessa Dos Reis Ferreira, Prof. Jaak Jaeken
Languages: English, Italian, Portuguese, Spanish
Keywords: CDG, Congenital Disorders of Glycosylation, PIGG-CDG

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MAN1B1-CDG Infographic

Infographic

Disorders (CDG Types): MAN1B1-CDG
Year: 2021
Authors: Rita Francisco, Sandra Brasil, Emma Finklaire, Vanessa Dos Reis Ferreira, Prof. Jaak Jaeken
Languages: English, Italian, Portuguese, Spanish
Keywords: CDG, Congenital Disorders of Glycosylation, MAN1B1-CDG(MRT15), MAN1B1-CDG

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SLC39A8-CDG Infographic

Infographic

Disorders (CDG Types): SLC39A8-CDG
Year: 2021
Authors: Marta Falcão, Carlota Pascoal, Michael & Lilah Labovitz, Vanessa Dos Reis Ferreira, Prof. Jaak Jaeken
Languages: English
Keywords: CDG, Congenital Disorders of Glycosylation, SLC39A8-CDG

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