EUROMAC TEACHING COURSE: DIAGNOSIS AND MANAGEMENT OF MCARDLE DISEASE AND RARE MUSCLE GLYCOGENOSES
Friday 13th May 2016
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Venue: Centrum Biblioteczno-Informacyjne WUM 63 Żwirki i Wigury str. 02-091 Warszawa
9:00 Welcome
Professor Anna Kaminska (Warsaw)
9:15 The EUROMAC Registry
Dr Ramon Martti (Barcelona)
9:45 McArdle disease and other rare glycogen storage disorders: clinical phenotype, diagnosis and treatment
Dr Ros Quinlivan (London)
10:30 Screening for Pompe Disease in Poland
Professor Anna Kostera-Pruszczyk (Warsaw)
11:15 COFFEE
11:30 Functional Assessments for McArdle Disease and related disorders
Ms Sherryl Chatfield (London)
12:00 How to perform the Forearm Exercise Test
Ms Suzanne Booth (London)
12:15 Quality of Life and Pain Management for McArdle disease
Dr Jatin Pattni (London)
13:00 LUNCH
13:30 Exercise (Aerobic and anaerobic!) as therapy for McArdle Disease
Dr Richard Godfrey (London)
14:00 Dietary intervention in McArdle Disease
Ms Rachel Carruthers(London)
14:30 What Can Patient Organisations do to Help?
Mr Andrew Wakelin (AGSDUK)
15:15 TEA
15:30 Animal models for McArdle disease
Dr Tomas Pinos (Barcelona)
16:00 Clinical trials for McArdle Disease
Dr Renata Scalco (London)
16:30 CLOSE