MPS-C2M3: Role of Paediatricians. Managing the MPS Patient with Everyday Health Issues

ORGANISED AND VIDEO IS AVAILABLE

➡️ Recorded: Wednesday 3 June 2020  
➡️ Language: English  
➡️ Duration: 40 min  
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Presenter: SIMON JONES, Royal Manchester Children's Hospital, United Kingdom  
▷  Presenter: JANE ROBERTS, Royal Manchester Children's Hospital, United Kingdom  

Learning Objectives: (1) Understanding the importance of the multidisciplinary team approach to managing MPS patients (2) Discussing the role of the local or general paediatrician in coordinating local care, allied healthcare professionals and acute admissions (3) Underlining the importance of communication between centres, professionals and families in managing MPS patients

 

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  • Simon Jones is a consultant in paediatric inherited metabolic diseases at the Willink Unit at St. Mary’s Hospital in Manchester, UK. His major research interest is therapy for lysosomal storage diseases (LSDs). He received his medical training at the Edinburgh University Medical School, Edinburgh, UK, with a BSc in Neurosciences. He moved to London and trained in Paediatrics at Guy’s and St. Thomas’ Hospital, London, UK. He has been working at the Willink Biochemical Genetics Unit in Manchester, UK since September 2005. Since 2008, he has been a consultant in paediatric inherited metabolic diseases at the Willink Unit and is now the clinical lead for the LSD service. The Willink Unit is now part of the Manchester Centre for Genomic Medicine at St. Mary’s Hospital, Manchester, UK. He is the medical director of the NIHR Manchester children’s clinical research facility. Dr Jones has been actively involved in many phase I-IV international multicentre trials of novel therapies for LSDs. He is currently the principal investigator in a number of LSD trials and a senior lecturer at the University of Manchester. He is an author of over 60 peer-reviewed papers and 3 book chapters. When not working, he watches Liverpool Football club and spends time with his family.

  • Jane Roberts is a Clinical Nurse Specialist at Royal Manchester Children’s Hospital. After qualifying as a registered general nurse in London more than 30 years ago (!), Jane eventually moved further north until she ended up at the Royal Manchester Children’s Hospital, where she completed her registered sick children's nurse (RSCN) training and where she has remained for over 3 decades. Jane joined the Willink metabolic team in 2001 when the first mucopolysaccharidoses (MPS) trial commenced; after coordinating a couple of international drug trials, she became the clinical nurse specialist for MPS II, VI and Fabry disease. The Wolman (LAL-D) babies were added to her caseload and she continues to enjoy the challenges of working with new cohort of patients. Jane feels that the world of lysosomal storage disorders (LSDs) has changed so much in the relatively short time she has been involved. Disease awareness has been highlighted, drugs licensed, patient care improved and best practice shared. She maintains that these children and families deserve our best efforts and unending support as they continue to push through the continuing hardships that such diseases impose.nded and designed for use by healthcare professionals with an interest in metabolic diseases and MPS and alpha-mannosidosis. 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.

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. 

 

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