auOctober 18 - 19, 2014 in Melbourne, Australia 

'The Australian Pompe's Association Inaugural Patient and Friend's Forum'

Program details will follow

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(Last Updated Saturday, 01 March 2014 17:19)


gbOctober 18-19, 2014 in Wychwood Park, Weston, Crewe, Cheshire, CW2 5GP, United Kingdom

The AGSD-UK offers several workshops. Two of them concern Pompe disease.

On Saturday a 3 hrs workshop will host a Pompe Infants Workshop led by Joan Fletcher CNS for families caring for Pompe infants.

Topics will include:

  • ERT Outcomes - Dr. Alex Broomfield (Manchester Children's Hospital)
  • Clinical Psychology
  • Physiotherapy - Michelle Wood (GOSH)
  • Speech and Language - Sonia Lozano (GOSH)
  • Newborn Screening - Prof. Simon Heales (GOSH)
  • Treatment Guidelines - Dr. Simon Jones (Manchester Children's Hospital)

On Saturday and Sunday a varied program will be available in the Pompe Adult Workshop.


  • Respiratory Issues and Back Pain - Mark Roberts, Royal Salford Hospital
  • Mindfulness - Sam Murduck (PST)
  • Exercise and Diet - Steve Dando (National, London) and Nicola Condon (UHB)
  • Program Update - Amicus Therapeutics


  • Pompe Publications (101 Top Tips) - Angela Biggs (PST)
  • Research Developments - Powell Gene Therapy Centree, University of Florida
  • International Pompe Day - Ben Parker (PST)
  • Fundraising initiatives for Pompe - Allan Muir (AGSD-UK)
  • Pompe Advocacy Requirements - Joan Fletcher and Allan Muir (AGSD-UK)
  • Pathways to Diagnosis - Genzyme UK

(Last Updated Tuesday, 30 September 2014 06:31)


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