AGSD-UK Conference 2019 – Daresbury, Cheshire

Go to information about the venue, bookings and link to final programme.

Programme details announced

After the conference opening, general talks and workshops will follow in the usual format. Topics should include:

Plenary

Charity Update, Neil Bradbury, AGSD-UK CEO
EURORDIS Summer School, Kempton Rees
Social Media & GSD; Friend or Foe?, Lauren Thompson and Ciara Harkins

Hepatic GSD Workshop

Moving on with GSD, Lauren Thompson and Ciara Harkins
Glyde – modified cornstarch Study, Dr Helen Mundy
Groningen Research, Irene Hoogeveen
Managing neutropenia in GSD1b, Dr Saikat Santra
GSD1b in England, a multi-centre survey, Dr Bec Halligan
Mental Health, Speaker TBC
Nutrition for Hepatic GSDs, Dr Gisela Wilcox
Pain Management, Dr Jonathan Rajan
GSD 1a Gene Therapy update, Dr Helen Mundy
GSD 3 Gene Therapy, Guiseppe Ronzitti
Prealbumin in ketotic GSD project, Dr Helen Mundy
Hepatic GSD Bone health study, Speaker TBC
Specialist healthcare Panel Q&A

Pompe Workshop

Research Update, Dr Mark Roberts
Research at Erasmus MC, Rotterdam, Dr Pim Pijnappel
Secretable Gene Therapy, Guiseppe Ronzitti
Falls prevention, Andrew Oldham and John Foxwell (PST)
Exercise, Andrew Oldham
Nutrition, Dr Gisela Wilcox
Pain Management, Dr Jonathan Rajan
Research into GI Issues, Paul McIntosh, Duke University
Round-table discussions: Join 2 of 6 tables
– Mental health and counselling
– Pain Management
– Physiotherapy Open Session
– Travel and holidays
– Top Tips
– Nutrition

McArdle and Muscle GSD Workshop

“Get to know you” session
My walking course experience
New international registry and Euromac update
Walking courses rollout – Germany and USA
Advocacy and McArdle disease
Report from the McArdle Disease Service
Avoiding and managing pain in McArdle’s
International research update
Top Tips for day to day management
What does the future hold?
Website and publications review – your chance to input

Meditation

During the Sunday morning workshops there will be a parallel meditation session with a professional trainer, held in a separate room for a small group. The session will be held twice during the morning.

Creche

Throughout the conference we will again be joined by the Bulwell Toy Library to provide free and experienced childcare.

Children’s Disco and Dinner

Also planned for Saturday is a Children’s Hat Parade and Disco, followed by Dinner.

I hope to see you in Daresbury.

Allan

Allan Muir, Charity Director, AGSD-UK