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

Journal: Orphanet journal of rare diseases

Publication date: 2024

Journal: Orphanet journal of rare diseases

Publication Year: 2024

Authors & Co-authors:  Poejo Gomes Granjo Dos Reis Ferreira

Analysis of caregiver perspectives on patients with mucopolysaccharidosis II treated with pabinafusp alfa: results of qualitative interviews in Japan.

Journal: Orphanet journal of rare diseases

Publication date: 2024

Journal: Orphanet journal of rare diseases

Publication Year: 2024

Authors & Co-authors:  Nakamura Sakai Hossain Eisengart Yamamoto Tanizawa So Schmidt Sato

Effectiveness of asfotase alfa for treatment of adults with hypophosphatasia: results from a global registry.

Journal: Orphanet journal of rare diseases

Publication date: 2024

Journal: Orphanet journal of rare diseases

Publication Year: 2024

Authors & Co-authors:  Kishnani Martos-Moreno Linglart Petryk Messali Fang Rockman-Greenberg Ozono Högler Seefried

The IMPACT survey: a mixed methods study to understand the experience of children, adolescents and adults with osteogenesis imperfecta and their caregivers.

Journal: Orphanet journal of rare diseases

Publication date: 2024

Journal: Orphanet journal of rare diseases

Publication Year: 2024

Authors & Co-authors:  Westerheim Hart van Welzenis Wekre Semler Raggio Bober Rapoport Prince Rauch