MPS EUROPE COURSE 2 (6 Webinars)


COURSE 2

The Multidisciplinary Team (MDT) Approach to MPS Patient Care, Treatment and Support

Enhancing the Quality of Life of Persons Affected by Mucopolysaccharide (MPS) Across Europe

The premise is that by looking at the multidisciplinary team healthcare team approach healthcare professionals can better understand how to support patients with MPS in everyday healthcare needs. In addition by providing a better understanding of the latest treatment options, we can help HCPs better support patients.

An MPS Europe project in partnership with MetabERN and the Excellence in Pediatrics. All webinars are free to attend, and a certificate of attendance will be provided by the Excellence in Pediatrics Institute for those attending a module. 


MODULE 1 

Supporting MPS Patients in Times of COVID-19 Epidemic - Practical Information for Pediatricians

Recorded: Monday 18 May 2020 ● Language: English ● Duration: 60 minutes  

Presenters

CHRISTINA LAMPE, University Hospital of Gießen, Germany  ●  HEATHER LAU, New York University, USA, ●  DAFNE HOROVITZ, Instituto Nacional de Saude da Mulher, da Criança e do Adolescente Fernandes Figueira, Brazil, ● 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

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MODULE 2 

A Personal Perspective - Understanding the MPS Patient's Needs

Recorded: Wednesday 27 May 2020 ● Language: English ● Duration: 40 minutes  

Presenters

MICHAELA WEIGL, Austrian MPS Society, Austria ● OSKAR AHLBERG, Swedish MPS Association, Sweden 

Learning Objectives: (1) Understanding a child’s MPS diagnose journey from the family's perspective (2) Gaining an insight into everyday life, family, siblings, daycare, kindergarten and school (3) What all paediatricians need to pay attention to - useful tips and advice from parents to HCPs (4) What parents want paediatricians to ask them but they never have

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MODULE 3 

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

Recorded: Wednesday 3 June 2020 ● Language: English ● Duration: 40 minutes  

Presenters

SIMON JONES, Royal Manchester Children's Hospital, United Kingdom  ● 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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MODULE 4 

Psychological Care for the Child and Family with MPS Disorder

Recorded: Wednesday 10 June 2020 ● Language: English ● Duration: 30 minutes  

Presenter

STEWART RUST, Royal Manchester Children's Hospital, United Kingdom

Learning Objectives: (1) Increase awareness of the psychological challenge to the families and young people coping with a chronic condition (2) Be familiar with the adjustment cycle in grief/adaptation (3) Provide some reminders about how to support and cope with distress in children and families

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MODULE 5 

Advances in Treatments Available for MPS

Recorded: Wednesday 17 June 2020 ● Language: English ● Duration: 30 minutes  

Presenter

Prof. FLORIAN LAGLER, Paracelsus Medical University in Salzburg, Austria  

Learning Objectives: (1) Limitations of current therapies (2) State of development of emerging therapies (3) Active mechanisms of emerging therapies (4) Limitations of emerging therapies

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MODULE 6 

The MPS Patient's Transition from Childhood to Adulthood - Practical Advice for Paediatricians

Recorded: Wednesday 24 June 2020 ● Language: English ● Duration: 60 minutes  

Presenter

CHRISTINA LAMPE, University Hospital of Gießen, Germany

Learning Objectives: (1) What is transition and why is it needed? (2) What do we know about the transition in different countries? (3) Which models of transition exist or one model fits all?

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An MPS Europe project in partnership with MetabERN and the Excellence in Pediatrics,  with the support of 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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