|ORGANISED AND VIDEO IS AVAILABLE|
➡️ Recorded: Monday 18 May 2020
➡️ Language: English
➡️ Duration: 60 min
▷ Presenter: CHRISTINA LAMPE, University Hospital of Gießen, Germany
▷ Presenter: HEATHER LAU, New York University, USA
▷ Presenter: DAFNE HOROVITZ, Instituto Nacional de Saude da Mulher, da Criança e do Adolescente Fernandes Figueira, Brazil
▷ Presenter: MAURIZIO SCARPA, Udine University Hospital, Italy
Learning Objectives: (1) Reviewing how the Covid-19 pandemic is affecting MPS patient’s care and support provided (2) Comparing the current situation with examples and updates from Italy, Germany, Brazil and the USA (3) Practical advice for paediatricians on how you can best support MPS patients at this time
- Christina Lampe is Director of the Centre for Rare Diseases of the Department of Child Neurology, Epileptology and Social Medicine, Center for Paediatric and Adolescent Medicine, University Hospital of Gießen, Germany.
- Heather A. Lau, MD, MS. is director of NYU Langone Health’s Division of Neurogenetics. She maintains a large practice, treating children and adults with a wide range of rare, inherited disorders of the nervous system. She also has special expertise in the treatment of Gaucher disease. Dr Lau and her team are actively engaged in cutting-edge research, allowing patients access to the latest treatments. She is the principal investigator for a variety of trials evaluating the efficacy of small molecules—such as chaperone therapy and substrate reduction therapy, enzyme replacement therapy, and gene therapy—in treating neurogenetic disorders.
- Dafne DG Horovitz, MD, PhD, is a clinical geneticist and pediatrician at the National Institute of Women, Children and Adolescent Health Fernandes Figueira / Fiocruz in Rio de Janeiro, Brazil. Her work involves genetic counselling, birth defects, prenatal diagnosis, chromosomal abnormalities, new treatments for genetic diseases, and public health policies in genetics. Dr Horovitz is a professor in the post-graduation programs of Public Health and Applied Research and also involved in the medical residency program for Medical Genetics. She has been involved in the treatment of lysosomal storage disorders for the past 16 years, and implemented and currently coordinates the hospital’s enzyme replacement therapy unit. Dr Horovitz has been in the board of directors of the Brazilian Society of Medical Genetics for several years and is a consulting member of the Brazilian Ministry of Health for the special policy on rare diseases. She has published and collaborated in research on medical genetics, lysosomal storage disorders, and public health.
- Maurizio Scarpa, MD, PhD, paediatrician, is the Founder and President of the Brains for Brain Foundation, a Pan-European task force on brain and neurodegenerative diseases, and Director at the Coordinating Center for Rare Diseases, Udine University Hospital, Udine, Italy. He is Professor of Paediatrics at the Dept. Of Women’s and Children’s Health, University of Padova, Italy.
Important Note: The information provided on this session is intended and designed for use by healthcare professionals with an interest in metabolic diseases and MPS. All session viewers are required to register for the selected webinar before accessing the content. Content and views shared are solely those of the speaker.
The course is an MPS Europe project in partnership with MetabERN and the Excellence in Pediatrics with the support of Abeona, Biomarin, Orchard Therapeutics, Regenxbio, Sanofi Genzyme, Takeda, and Ultragenyx. All modules of the course are independently organised by EIP in terms of content, topics and speakers appointed.