October 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