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