RES-S1: Spot the Signs of Primary Ciliary Dyskinesia (PCD)
Claire Hogg (Imperial College London)
May 06, 2021
Excellence in Pediatrics is a global community of pediatricians allowing members to engage in peer-to-peer learning, to connect and work with their colleagues around the world at the annual conference and through our online platform. We invite child healthcare professionals to become members, access our educational resources and actively participate in our activities. No membership fee is applied. |
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ACCESS OUR FREE RESOURCES |
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We are taking the learning outside the halls and arranging a series of free-to-view webinars, hosted and promoted every month throughout the year. EIP's target is to increase awareness and knowledge among frontline child healthcare professionals through Peer-to-Peer education and sharing essential information. Webinars are recorded and made available to the 45,000 healthcare professionals connected to EIP, and many thousands more around the world. Over the past years, EIP has developed extensive online educational content by recording sessions of the annual conference delivered by leading Key Opinion Leaders in Pediatrics. Our Recorded Webinars and Recorded Sessions Library allows you to update your skills and knowledge anywhere and at any time. |
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BE PART OF THE SPOT THE EARLY SIGNS EDUCATION PROGRAM |
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| 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. Following a Peer2Peer educational approach, the program targets to improve everyday practice and the way child healthcare professions advise and treat the children and families they support. Pediatricians and family doctors are likely to be the first healthcare professionals to observe symptoms, and it is important to help these front-line clinicians suspect, diagnose, and refer patients. Over the last years, the program has focused on the diagnosis of Mucopolysaccharidosis (MPS) and Metachromatic Leukodystrophy (MLD). |
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MUCOPOLYSACCHARIDOSIS (MPS) |
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Resource Center and 23 webinars |
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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. 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. All recorded webinars are available to view without charge via the Resources Section of the site, along with further information on the Faculty, Campaigns and how you can Join Us to make your colleagues ‘think rare’ at every opportunity. You can also find all 23 recorded webinars on the Symptoms, Diagnosis Treatment of Mucopolysaccharidosis (MPS) in our library. |
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METACHROMATICLEUKODYSTROPHY (MLD) |
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Free-to-Access 2-Hour Accredited Course. Earn 2 EACCME Credits |
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| Early-onset clinical manifestations are often overlooked or confused with other conditions causing confusion among non-trained HCPs at first contact, resulting in misdiagnosis, wrong referral routes and delays in the early start of treatment. Delays in starting treatment have significant consequences on the conditions’ development and the patient’s health and quality of life. This delay in referral and treatment must be overcome. The 2-hours course covers the basics of MLD, practical neurological case studies that offer the opportunity to connect the theory with the practice and treatment options. Further Information and free enrolment here. | ||||
WHAT RARE DISEASES ARE NEXT TO COVER? |
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| Help us understand your needs and shape our future education programs. Take the short surveys below to share your views. Each survey consists of 9 questions and it will take no more than 3 minutes to complete each. | ||||
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Make your voice heard and suggest alternative disease topics to those listed above for EIP to consider developing a Spot the Early Signs Program. Use the link HERE to suggest new topics. |
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Claire Hogg (Imperial College London)
May 06, 2021
Liz Whittaker, Taco Kuijpers, Rolando Cimaz
May 06, 2021
Francesca Fumagalli (San Raffaele Hospital Milan)
May 05, 2021
Bianca Link (Kinderspital Zurich)
Dec 24, 2020
Ana Maria Martins (Federal University of Sao Paulo)
Dec 23, 2020
Anna Sophie Hoffmann (University Medical Center Hamburg-Eppendorf)
Dec 22, 2020
Cathy Richards (NHS Lothian)
Jan 26, 2019
Torbjorn Torsheim (University of Bergen)
Jan 21, 2019
Dan Chisholm (World Health Organisation)
Jan 21, 2019
The Excellence In Pediatrics is a busy network allowing members to work collaboratively with their colleagues around the world. Our members are the heart of the Institute, they decide on the strategy, the priorities and the activities of the Institute. They are sharing their knowledge, exchanging best practices and shaping the future of pediatrics contributing in terms of both content and ideas. The Excellence In Pediatrics is open for individual professionals from all over the world to become members. Membership is free. Please complete the form below to become member of EIP