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Transformative effect of a Humanitarian Program for individuals affected by rare diseases: building support systems and creating local expertise.
Verma, I C; El-Beshlawy, A; Tylki-Szymanska, A; Martins, A; Duan, Y-L; Collin-Histed, T; van der Linde, M Schoneveld; Mansour, R; Dung, V C; Mistry, Pramod K.
Afiliação
  • Verma IC; Institute of Genetics and Genomics, Sir Ganga Ram Hospital, Rajinder Nagar, New Delhi, 110060, India.
  • El-Beshlawy A; Department of Pediatrics, Faculty of Medicine, Cairo University, Cairo, Egypt.
  • Tylki-Szymanska A; Department of Pediatrics, Nutrition and Metabolic Diseases, The Children's Memorial Health Institute, Warsaw, Poland.
  • Martins A; Fabry Registry Brazil, Latin America Fabry, Gaucher, MPS I and Pompe Registries, Universidade Federal de São Paulo, São Paulo, Brazil.
  • Duan YL; Medical Oncology Department, Pediatric Oncology Center, Beijing Children's Hospital, Capital Medical University, National Center for Children's Health, Beijing, China.
  • Collin-Histed T; Beijing Key Laboratory of Pediatric Hematology Oncology, Key Laboratory of Major Diseases in Children, Ministry of Education, Beijing, China.
  • van der Linde MS; International Gaucher Alliance, Dursley, UK.
  • Mansour R; Independent patient author, Varsseveld, The Netherlands.
  • Dung VC; Project HOPE (Health Opportunities for People Everywhere), Cairo, Egypt.
  • Mistry PK; Department of Medical Genetics, Metabolism and Endocrinology, Vietnam National Children's Hospital, Hanoi, Vietnam.
Orphanet J Rare Dis ; 17(1): 87, 2022 04 04.
Article em En | MEDLINE | ID: mdl-35369888
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Texto completo: 1 Base de dados: MEDLINE Assunto principal: Doenças por Armazenamento dos Lisossomos / Doenças Raras Idioma: En Ano de publicação: 2022 Tipo de documento: Article
Texto completo
Imprimir
XML
PubMed Links
Buscar no Google

Texto completo: 1 Base de dados: MEDLINE Assunto principal: Doenças por Armazenamento dos Lisossomos / Doenças Raras Idioma: En Ano de publicação: 2022 Tipo de documento: Article