A SMA Seminar will take place at Boss Conference Centre on 23.08.2018 r., the first day of the event. Its topics will include current approached to treatment and patient care in SMA. Updates on latest clinical progress will be presented. This will be an unparallel opportunity to meet and share experience among Polish and international SMA experts.

The SMA Seminarium is open only to healthcare professionals (medical doctors, physiotherapists and healthcare experts) as well as to representatives of registered SMA patient organisations.

Starting from Session III, there will be two parallel tracks: one on forthcoming therapies for doctors and another one on physiotherapy care for physiotherapists.

Registration for the Seminar is done using the button at the bottom of this page (please do not use the form at the Registration tab).

Seminar programme

THURSDAY 23 AUGUST

08:30 – 09:30 REGISTRATION

09:30 – 11:00 SESSION 1: STANDARD OF CARE IN SMA  Prof. Anna Kostera-Pruszczyk, MD PhD

– SMA patient in intensive care: protocols of extubation and respiratory care – Asst. Prof. Miguel R. Gonçalves, MD PhD (Centro Hospitalar de São João, Porto)
– Orthopaedic care in SMA – Tomasz Potaczek, MD PhD (Jagiellonian University, Kraków)
– Orthotics in SMA – Chiara Mastella, PT MSc (Policlinico de Milan)
– Nutrition in SMA – a case study – Prof. Ewa Toporowska-Kowalska, MD PhD (Łódź Medical University)

11:00 – 11:30 COFFEE BREAK

11:30 – 13:00 SESSION II: NUSINERSEN THERAPY IN SMA

– Experience of nusinersen administration in Poland
– Challenges related to intrathecal injection – Prof. Laurent Servais, MD PhD (Institut de Myologie, Paris; CHR Citadelle, Liège)
– Effects of nusinersen therapy in Polish children treated within Expanded Access Programme – Karolina Aragon-Gawinska, MD (Institut de Myologie, Paris; Warsaw Medical University)
– Patient's psychological comfort during nusinersen administration – Prof. Laurent Servais, MD PhD (Institut de Myologie, Paris; CHR Citadelle, Liège)
– Safety and adverse event reporting – Prof. Anna Kostera-Pruszczyk, MD PhD (Warsaw Medical University)

13:00 – 14:00 LUNCH

14:00 – 16:00 SESSION III MEDICAL: THERAPIES OF THE FUTURE – Prof. Barbara Steinborn, MD PhD

– Polish SMA Registry and recruitment for clinical trials – Anna Łusakowska, MD PhD (Warsaw Medical University)
– Challenges in Sunfish and Firefish clinical trials – discussion – Prof. Barbara Steinborn MD PhD (Poznan Medical University), Prof. Laurent Servais, MD PhD (Institut de Myologie, Paris; CHR Citadelle, Liège), Karolina Aragon-Gawinska, MD (Institut de Myologie, Paris; Warsaw Medical University) 
– CLINICAL RESEARCH UPDATES: Avexis, Novartis, Roche

14:00 – 15:30 SESSION III PHYSIOTHERAPY: NEW STANDARD OF CARE IN SMA  dr Agnieszka Stępień

– Standardy opieki fizjoterapeutycznej w SMA – Agnieszka Stepien, PT PhD (University of Physical Education, Warsaw)
– Standards of physiotherapy care in SMA – Artur Bartochowski, PT MSc (Warsaw)
– Prevention of respiratory problems in the work of a physiotherapist – Asst. Prof. Miguel R. Gonçalves, MD PhD (Centro Hospitalar de São João, Porto), Chiara Mastella, PT MSc (Policlinico de Milan)

15:30 – 16:00 COFFEE BREAK

16:00 – 18:00 SESSION IV PHYSIOTHERAPY: FUNCTIONAL SCALES IN SMA

– Hammersmith Functional Motor Scale – Marion Main, PT MSc (University College London)
– Hammersmith Infant Neurological Evaluation – Marion Main, PT MSc (University College London)
– CHOP-INTEND – Artur Bartochowski, PT MSc (Warsaw)

STARTING 18:00 Entertainment programme, bonfire, dinner, time for a drink and integration with SMA families


FRIDAY 24 AUGUST

Friday is the main day of the SMA Conference for the families and invited experts. Lectures, debates, workshops for families, workshops for physiotherapists, and an integration programme take place all day. You are most welcome to stay throughout Friday and part Saturday – if you do so, please mark an appropriate option in the form below. Please keep in mind that we do not provide overnight stay, unless you are also registered for the remaining part of the event.


IMPORTANT:

Please note that you can only register for this Seminar if you are a healthcare professional: a medical doctor, physiotherapist, healthcare regulator, representative of a pharmaceutical company, or an official representative of a registered SMA patient organisation.

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