MISDIAGNOSIS OF MUCOPOLYSACCHARIDOSIS (MPS)

The program aims to fight under-diagnosed or late-diagnosed conditions for which treatments are available and where early detection and early treatment could make a significant difference in the condition's development, the quality of life and the survival of patients. 


Misdiagnosis of Mucopolysaccharidosis (MPS) results in late diagnosis and the late start of treatment, which has significant consequences on long-term outcomes. This gap usually results in confusing symptoms with other conditions, most notably trying to address symptoms directly and therefore delaying actual diagnosis and treatment, or referring the patient to the wrong pediatric specialties causing further delays in the condition’s management chain.

Over the past 4 years, EIP is proud to have built a network of 1000 plus trained healthcare professionals who have attended one or more of the webinars. This sub-network of the EIP Community now have MPS at the top-of-their-minds and are ready to spread the word and share the ’think rare’ message to their colleagues. To assist EIP has launched this dedicated Spot the Early Signs Resource Centre to spread education in local medical communities, and further develop and expand the trained on MPS frontline healthcare professionals network. The Resource Centre allows members to collaborate, engage and interact and where they can easily find information and education when needed - both for members and to share with colleagues.


WHAT YOU CAN FIND IN THE RESOURCE CENTRE

  • Faculty - 40 of the leading global metabolic disorders experts who have delivered EIP webinars with links to their profiles and recorded webinars.
  • Readings - The base knowledge about LSDs and MPS, and interesting articles and publications on MPS.
  • Resources - Support materials, MPS Europe Webinars, informative videos, infographics and useful links to organisations and MPS Societies.
  • Campaign - Preprepared banners and tweets for use by members to get the message out and share the webinars, knowledge and the 'Spot the Early Signs' mantra.
  • Recorded Webinars - Access to the 8 videos from series 1 and 2, as well as a link to all other EIP recorded webinars 
  • Live Webinars - A summary of the 4 upcoming webinars in series 3, speaker profiles, webinar dates, times and titles and regstration links.

ATTEND LIVE THE UPCOMING WEBINAR

SAVE THE DATE


Learn more about the Series 3 Case Studies Webinars that will be taking place in Autumn 2020. Series 3 builds on the webinars from 2018 and 2019 to focus fully on practical case studies that offer the opportunity to connect the theory with the practice allowing viewers to challenge their acquired knowledge and also gives them tangible paradigms on when to suspect, what to check and how to confirm. Use the links below to see a summary of the 4 upcoming webinars, as well as speaker profiles, webinar dates, times and titles and booking links.

FREE REGISTRATION TO ATTEND LIVE AND ALSO TO ACCESS THE RECORDED VIDEO AFTER THE WEBINAR IS ORGANISED



WEBINAR 4 
Mucopolysaccharidoses - Complex Case Studies Requiring a Multidisciplinary Approach
What Every Paediatrician Should Look For

Wednesday 25 November, 13:00 CET

Language: English ● Duration: 40 minutes

Presenter: Dr CHRISTINA LAMPE, University Hospital of Gießen, Germany (DE)
Presenter: Prof. ADRIANA MONTANO, Saint Louis University (USA)

View the Learning Objectives

FREE REGISTRATION TO ATTEND LIVE AND ALSO TO ACCESS THE RECORDED VIDEO AFTER THE WEBINAR IS ORGANISED

 


FREE REGISTRATION

 

 


WATCH THE VIDEOS OF THE RECORDED WEBINARS


WEBINAR 1 
Joint and Bone Manifestations of Mucopolysaccharidoses
 Case Studies

Organised
Wednesday 4 November

Language: English ● Duration: 30 minutes

Presenter: Dr BIANCA LINK, Kinderspital Zurich, Switzerland (CH)

View the Learning Objectives

 


WATCH THE VIDEO

 




WEBINAR 2
 Short Stature and Other Endocrine Presenting Symptoms of Mucopolysaccharidosis
 Case Studies

Organised
Wednesday 11 November

Language: English ● Duration: 30 minutes

Presenter: Prof. ANA MARIA MARTINS, Federal University of Sao Paulo, Brazil (BR)

View the Learning Objectives

FREE REGISTRATION TO ATTEND LIVE AND ALSO TO ACCESS THE RECORDED VIDEO AFTER THE WEBINAR IS ORGANISED

 


WATCH THE VIDEO

 




WEBINAR 3 
Otorhinolaryngological Manifestations of the Mucopolysaccharidoses
Case Studies

Organised
Wednesday 18 November

Language: English ● Duration: 30 minutes

Presenter: Prof. ANNA SOPHIE HOFFMANN, University Medical Center Hamburg-Eppendorf, Germany (DE)

View the Learning Objectives

FREE REGISTRATION TO ATTEND LIVE AND ALSO TO ACCESS THE RECORDED VIDEO AFTER THE WEBINAR IS ORGANISED

 


WATCH THE VIDEO

 

 


  • Volunteer Sign up

    BECOME PROGRAM EDUCATOR

    Will you volunteer to organise an educational activity related to Misdiagnosis of Mucopolysaccharidosis and help the program's outreach? Work with us to present a webinar in English or in your national language, or to organise an educational activity in your facility.

Take the opportunity to visit all EIP websites and learn about the activities of the Excellence in Pediatrics Institute, the annual Excellence in Pediatrics Conference offering cross-speciality education, the Excellence in Pediatrics Community of pediatricians allowing members to engage in peer-to-peer learning through webinars and online courses, the Vaccines Together an online collaboration hub, targeting to increase vaccination coverage rates, and the Spot the Early Sigs Education Program aiming to fight under-diagnosed or late-diagnosed conditions for which early diagnosis can make a dofference

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