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Conference Reports

AGSD-UK Family Conference 2009

Luke Fraser was once again in attendance at this year’s annual meeting and reports back here.

This year the AGSD-UK conference was set in the faded grandeur of the Ramada Jarvis Hotel, Leicester on 26 September, and had a briefer feel than last years’ Joint IPA/AGSD-UK two-day event. There was a good turnout of professionals, patients and families however, and returning audience members could glean some new information relevant to the Pompe community alongside by-now familiar topics and themes...

To read more, please click here

AGSD-UK and IPA ANNUAL CONFERENCE 2008

READING, 27^thand 28^th SEPTEMBER 2008

This year's AGSD (UK) Patient Conference was combined for the second time with the Annual General Meeting of the International Pompe Association (IPA), with the two meetings being held over a the course of a weekend in Reading. This extended event provided an opportunity for a larger number of speakers than has been seen at previous years' AGSD (UK) conferences and we were again fortunate to attract a wide range of guests and speakers from the international Pompe community as well as professionals and patients from within the UK.

The areas covered were numerous, albeit with a greater emphasis than before on practical issues relating to the management and efficacy of Enzyme Replacement Therapy (ERT) - a treatment that 1,000 patients worldwide are now enrolled on. Another recurrent topic was Homecare - the recently established service for the in-home delivery and administration of ERT.

The weekend was sponsored by the pharmaceutical companies Genzyme and Amicus as well as the homecare service providers Careology and Healthcare at Home. The sessions were chaired by IPA chairman and UK Pompe representative Allan Muir, with what follows being a summary of the various speakers' presentations. Video excerpts from the weekend will hopefully soon be available to view on this website.

My hope is that this reports conveys that the conference was an event rich in both clinical-technical and pragmatic information, straddling a sometimes difficult line between serving the interests of a specialist audience and a lay patient one. However I feel both parties were well served and there was a considerable degree of overlap between the two.

Conferences like these are a chance for the patient community to better acquaint and inform itself with respect to the often highly complex clinical and research areas surrounding conditions such as Pompe on the one hand, and on the other for clinicians, specialists and pharmaceutical company representatives to have greater contact and feedback from the patients whose health interests they serve. We are highly grateful to all those specialists who generously donated their time to attend, as well as to those patients and their families whose presence helps to ensure the existence of a community which continues to illustrate the fact that no Pompe sufferer is alone.

Luke Fraser - London, October 2008

Video clips of the Annual Conference

Click on the link above to watch all the main presentations from the Annual Conference 2008 or click on the presenation titles below to read Luke Fraser's report

Myozyme in the UK Community

Dr Suyash Prasad - Senior Associate Medical Director, Genzyme UK

Infantile Pompe Disease - Case Examples

Dr Simon Jones, Willink Biochemical Genetics Unit, Royal Manchester Children's Hospital

Screening At-Risk Populations and Future Newborn Screening for Pompe Disease

Dr Alan Cooper, Willink Biochemical Genetics Unit, Royal Manchester Children's Hospital

Myozyme Home Infusions

Mixed Panel from Careology and Healthcare at Home

Non-Invasive Ventilatory Care:Pulmonary Rehabilitation of Neuromuscular Disorders

Dr Heakyung Kim, Children's Hospital of Philadelphia

National Collaborative Study of LSDs

Prof. Stuart Logan & Dr Rob Anderson, Peninsular Medical School

Physiotherapy and Exercise

Laura Case, Physical Therapist, Duke University, North Carolina, USA

Emotional Issues in Pompe Disease

Joan Fletcher, Family Support Officer , AGSD-UK

Speech, Feeding and Swallowing Issues

Sonia Lozano - Specialist and Speech & Language Therapist, Great Ormond Street Hospital for Children, London

Myozyme Program: Global Update

Paul Merrigan, Vice President & General Manager (Pompe Disease), Genzyme Corporation, Boston, MA, USA

Gene Therapy Update: Bedside to Bench and Back

Dr Barry Byrne, Powell Gene Center, University of Florida

AT2220 Program Update

Mark Lyles, MD & Senior Director of Medical Affairs, Amicus Therapeutics, NJ, USA

Multidisciplinary Approaches to the Pompe Disease Infant - Where We Are and the Issues at Hand

Dr Priya Kishnani - Prof and Chief, Division of Medical Genetics, Dept of Paediatrics, Duke University Medical Centre,North Carolina, USA

Myozyme - Late Onset Treatment Study (LOTS)

Dr Suyash Prasad - Senior Associate Medical Director, Genzyme UK

Disclaimer

These reports represent one lay-person's impression of professional presentations given at a patient conference; we cannot guarantee either the accuracy of their content or their relevance to your particular circumstances. The reports have not, at this stage, been formally reviewed by the professionals making the presentations.

Joint LSD Patient Meeting, Royal Free Hospital, London

Luke Fraser recently attended the collaborative patient meeting for Lysosomal Storage Disorders. Read his comprehensive report here.

AGSD (UK) FAMILY CONFERENCE 2007

October 13th 2007

Another well attended family conference with a lot of oportunities for interaction and interesting presentations. Luke Fraser has created a comprehensive report of the Pompe workshop.

AGSD (UK) FAMILY CONFERENCE 2006

October 14th 2006

Following a busy and progressive year for Pompe research and treatment, the 2006 AGSD (UK) family conference was held in Bradford on 14 October. Turnout was very good with over twenty-five family members and a similar number of professionals, and the invited speakers included many key players with respect to Pompe. There was a full timetable which made for an informative day and importantly much of the information presented this year was directly relevant to UK Pompe patients and their families.

AGSD (UK) FAMILY CONFERENCE 2005

October 16th 2005

Pompe Workshop Report
Allan Muir, Pompe Representative, AGSD (UK)

On October the 16th this year we held our annual AGSD (UK) family conference in Milton Keynes. For the Pompe Workshop we had a good number of families present and hopefully I left enough time in and around the programme for them to chat and swap stories amongst themselves. We had the added advantage this year of sufficient sponsorship to allow us to put on a conference dinner the previous evening, adding to the sociability of the event. I would like to thank Genzyme Europe for supporting our 2005 conference so generously.