Save the date:

 AGSD-UK Conference,
 Wyboston Lakes Executive Centre,  Bedfordshire. 
 20-21 October 2018

 

 GSD Camp (click here)

 Whitemoor Lakes

 Lichfield, Staffs.

 28-30 September 2018

 

 

Glycogen Storage Disease Type II

Also known as Pompe disease or acid maltase deficiency.

More pages dedicated to Pompe will be included in our new web site. In the meantime here are some links to Pompe information.

 

Publications

  • 101 Tips for an easier life with Pompe Disease

 

Pompe links

 

Specialist Care Advisor

The AGSD-UK employs Jane Lewthwaite as a specialist care advisor for Pompe patients and families. Please use the contact form to email her directly about any issues relating to Pompe disease and she will reply to you by email or phone.

 

Newborn Screening Campaign

Please help AGSD-UK to campaign for improvements in the procedures for adding new conditions to the UK Screening programme.

 

Newborn screening is the only way to reliably detect Pompe disease at an early age. Infants, in particular, need to receive therapy within days or weeks of birth in order to protect them from irreversible muscle damage, heart failure and premature death.

 

AGSD-UK is a member of the UK Patient Advocates for Newborn Screening, PANS, and as a result of their discussions a paper has been written to seek support from the UK Governments and Members of Parliament.

 

The paper can be downloaded through this link. It, or the link, can be incorporated into a letter to your MP.

 

Your MP can be contacted by email using the government Search Facility.

 

 If you need any help with any of this then please contact Allan Muir, Charity Director, using the contact form.