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Our organisation and milestones

AGSD-UK is a registered charity supporting those affected by Glycogen Storage Disease (GSD).

We aim to provide support throughout the UK to patients and their families. In more detail we:

  • Protect and promote the best interests of those affected by any of the GSDs.
  • Communicate GSD related matters by commissioning, publishing and distributing relevant material.
  • Contribute to the advancement of treatments and cures through sponsorship and support of research, studies and trials.
  • Act as a focus for educational, scientific and charitable activities related to GSD.
  • Liaise with other GSD associations around the world.

Some of our key milestones

It was in 1929 that Von Gierke first described an illness which is now called Glycogen Storage Disease 1 (von Gierke’s disease).

1986
• AGSD-UK founded by Ann Phillips and Sue Del Mar, mothers of children affected by Glycogen Storage Disease.

 

1988
• Registered as a charity with the Charity Commission.
• Organised the first family conference.    

1996
• Awarded a grant to a research team at Erasmus Medical Centre, Rotterdam. The bioreactor developed with this grant proved the principle of Enzyme Replacement Therapy for Pompe disease.

• Supported the start of a McArdle Disease Service.

1997
• Funded the involvement of an exercise physiologist at the McArdle Clinic.

1998
• Co-founded the International Pompe Association with support groups from other nations.

1999
• Published agsd.org.uk web site dedicated to disseminating information on GSDs.

2003
• Vietnam bike ride – first major fundraising event.

 

2005
• Appointed part time patient liaison officer for Pompe disease in co-operation with Muscular Dystrophy UK.
• Sponsored research into “Model Systems for Developing Therapies for McArdle Disease”.

 

2007
• Appointed AGSD-UK Family Support Officer for Pompe, funded by Sanofi-Genzyme and based at St Mary’s Hospital, Manchester.

 

2009
• AGM agreed that the association should convert to a company limited by guarantee.

2010
• Recruited first paid employee.
• Opened office base in Droxford, Hampshire.
• “Walk over Wales” – 32 day awareness raising event.

2011
• Published “The McArdle Disease Handbook” on the medical and scientific research into GSD5.

2012
• Produced a short film “Hope in the Genes” to raise awareness of AGSD-UK.
• Published a book “101 Tips for a good life with McArdle Disease”.

2013
• Founding partner in the Euromac Registry.

2016
• Appointed a Specialist Care Advisor – Pompe.
• Wrote and published first in series of “Medical Overview” booklets to support decisions in primary care.

2017
• 
Developed two eLearning modules for GSDs, hosted by the Royal College of General Practitioners website.
• Wrote and published the book “101 Tips for a better life with Pompe Disease”.
• New logo designed and adopted.

2018
• Held family camp for children affected by GSD.
• Published the book “Top Tips for GSD3”.
• Worked with RCGP to launch eLearning modules on GSD.
• Facilitated first meeting of UK specialists to create Hepatic GSD Management Guidelines. 

2019
• Chief Executive recruited.
• Launched new and extended web site.
• Developed regional meetings for people affected by GSDs to get-together.
• Extended our Family Days, Kids Camps and Children & Parents courses.